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If 5-year-old Eowyn Pate had been born one year earlier, she likely wouldn’t be alive today.

That’s because New York state began screening for her rare genetic disorder in 2002. Before that, the little girl’s inability to break down stored fat for energy probably would have caused her to have seizures, slip into a coma and die before anyone knew what was wrong.

Instead, like all babies, Eowyn’s heel was pricked a day or two after she was born at Highland Hospital, five drops of blood were collected and the samples were sent to the state laboratory in Albany.

A couple of days later, the lab alerted Eowyn’s pediatrician that the baby tested positive for medium chain acyl-CoA dehydrogenase deficiency, known as MCADD. That discovery, confirmed by diagnostic testing, provided a scary reason why Eowyn was sleeping so much. Supplemental feedings prevented a crisis.

“We’re just grateful we did find out when we did,” says her mother, Ondrea Pate.

But a baby born today with the same disorder in Pennsylvania isn’t required to be screened for it, nor for certain other conditions that lack symptoms until they cause disabling or fatal damage.

A federal advisory committee in 2004 recommended which disorders newborns should be screened for, selecting those that can be treated if caught early, but states have the final say. Before that, most states required tests for just six disorders. Since then, states have expanded their lists, but still they don’t all agree.

“We’re moving more toward equality across the country, and equal access,” says Brad Therrell, director of the federally funded National Newborn Screening and Genetics Resource Center.

For some disorders, “every day matters,” says Dr. Michele Caggana, director of newborn screening in New York state.

The treatment for MCADD is to avoid fasting. Eowyn – named for a character in “The Lord of the Rings” – must eat every four hours. Her parents also feed her through a stomach tube daily at 3 a.m., while she sleeps. She’s otherwise a typical kindergartner at Albion Central School District who likes to swim, jump on a trampoline, dance, watch TV and play video games.

All states now require testing for MCADD except Pennsylvania, which adds it and 21 other conditions to the rules July 1.

Among the advocates for universal newborn screening are former Buffalo Bills quarterback Jim Kelly and his family. Kelly’s son, Hunter, was diagnosed at 4 months with Krabbe disease, a degenerative disorder that killed him in 2005 at age 8. Infantile Krabbe disease is typically fatal before age 2, but prognosis may be significantly better if children receive umbilical cord blood stem cells or bone marrow transplantation early.

The family’s Hunter’s Hope foundation, based in Erie County – the birthplace of newborn screening in 1962 – funds treatment and research and pushed New York to test for the leukodystrophy. In 2006, New York became the only state to test for Krabbe disease.

In 2008, Hunter’s Hope began lobbying for universal screening – meaning that all newborns in all states would be screened for all disorders for which early detection and treatment can improve babies’ lives.

“Thousands of children die each year because they’re born in the wrong state,” says Jacque Waggoner, Hunter’s grandmother and chief executive of the foundation.

If all recommended disorders had been screened nationwide in 2006, the Centers for Disease Control and Prevention estimates based on results from four states, then the number of infants identified with disorders may have been 6,439 instead of 4,370 – meaning an estimated 2,069 children were missed. The obstacles to screening expansion include cost, equipment, sufficient staff and the local or regional expertise to provide follow-up diagnosis and management, according to the CDC report.

New York is among the few states that don’t charge families for screening, which cost the state $11.9 million this year. Some states charge more than $100 per newborn.

Screening definitely saves lives, but more screening isn’t necessarily better, cautions Dr. Georgianne Arnold, a pediatric geneticist at Golisano Children’s Hospital at Strong. For some disorders, preventive treatment has thus far been disappointing in improving the health of screened babies. For some other disorders, experts disagree on the significance of the disorder, the accuracy of the screening test or the benefit of treatment.

Screened disorders that can be found in newborns are rare across the population, but the cumulative total is significant. Screening for 45 conditions in New York state led to 678 confirmed cases in 2007, which was nearly 0.3 percent of babies born, or one in 300 births, says Caggana.

“It’s never rare when it’s your baby,” Caggana says.

ARIZONA SCREENINGS

Arizona newborns are screened for 28 disorders, plus hearing loss.

Most commonly, a nurse takes a few drops of blood from a baby’s heel on the first day of life.

The hospital sends the sample to the newborn screening lab. If the results are unusual, the baby’s doctor is notified immediately and the doctor may request additional testing.

The Arizona screening panel includes:

• 6 amino acid disorders

• 5 fatty acid oxidation disorders

• 9 organic acid disorders

• Biotinidase deficiency

• Classic galactosemia

• Congenital hypothyroidism

• Congenital adrenal hyperplasia

• 3 hemoglobin diseases

• Cystic fibrosis

• Hearing loss

The screening panel follows the recommendations of the American Academy of Pediatrics, said Laura Oxley of the Arizona Department of Health Services, which oversees screening. According to Hunter’s Hope foundation, Arizona is the bottom three for for the number of disorders tested. The highest, Minnesota, tests for 54 disorders

Hospitals bill insurance providers for the cost of testing. For other tests, parents must make arrangements privately.

Between January and October 2008, 92 Arizona babies were identified to have 14 different serious, treatable medical conditions, according to DHS. The most common disorder was primary congenital hypothyroidism, with 43 cases found in that time period.

All 92 babies were helped to get the treatments needed, according to DHS.

By Gabrielle Fimbres, Gannett News Service

Levi Wolf became a “political wonk” at age 8 or 9, when he saw Bill O’Reilly on television for the first time.

“I didn’t necessarily agree with everything he said . . . but I was completely captivated,” said Wolf, now a 17-year-old senior at University High School.

Wolf’s passion for politics has resulted in a week-long, all-expenses paid trip to Washington, D.C., starting Saturday. Wolf was selected to represent Arizona at the 47th annual United States Senate Youth Program, and is one of 104 student delegates from around the country who will attend Washington Week.

“I’m really interested in seeing the way government works,” said the native Tucsonan, who is the son of Frank and Debora Wolf.

“I watch it all the time on C-SPAN, and I’m interested in meeting the people that make it work.”

Yvonne Tindell of Gilbert is the other Arizona student selected to attend. The two were selected by Tom Horne, superintendent of public instruction, from hundreds of Arizona applicants.

All student delegates will also receive $5,000 scholarships. Wolf hopes to pursue a law degree at George Washington University.

At UHS, he serves as senior representative to the student council. He is president of Model U.N. and was elected by his school’s team as “Best Overall Delegate.”

Trained in classical piano, he is in a band called The Kingsfoil.

The Senate Youth Program was created in 1962, sponsored by the Senate and funded by The Hearst Foundations. Teens selected rank academically in the top 1 percent of students in their states.

While in Washington, delegates will attend meetings and briefings with Senate leadership, the president, a Supreme Court justice, leaders of Cabinet agencies and top members of the national media.

“I’m really excited to see how government works together,” Wolf said.

Lisa Molina (left) received education and support from Healthy Families to help raise her daughter, Diamond Teran, 5, and son, Diego Romero, 3. But the program has lost 75 percent of its funding because of state budget cuts, and Molina is losing support from Healthy Families.

Lisa Molina blows up imaginary balloons with her children, enormous globes of yellow, red and orange.

When the balloons nearly fill the room, Molina and her kids let them go, and the family collapses into a giggling heap as they envision the balloons zipping through the air.

What may seem like silly fun is a stress reliever for Molina, a single mom, and her children, Diamond Teran, 5, and Diego Romero, 3.

Deep breathing required to fill up the imaginary balloons helps to calm them, and the activity tames just about any tantrum.

It’s one of the many techniques the Tucson mom has learned from Healthy Families. The program, administered through Child & Family Resources, has provided Molina, 33, with support and services to be the best parent possible.

“Healthy Families has made me a better mom,” she says.

But the family has been cut off from those services after the Arizona Legislature last week gutted Healthy Families’ annual funding of $3.5 million by 75 percent.

It is one of several programs – designed to help vulnerable Tucson families – that have sustained massive cuts in the Legislature’s attempt to balance the budget. (See story, 1A)

Molina, a portrait photographer who lost her job in December, is thankful to have been in the program for three years. She worries about the future without it.

“It makes me feel lost,” she said.

The program provides in-home education and support for parents starting with the birth of their children, and continuing through age 5. The goal of the program is to get families off to the best possible start by preventing child abuse and neglect.

While open to all parents, those selected for the voluntary program often experience one or more risk factors, including poverty, teen parenting, substance abuse, mental health issues or an ongoing crisis. Most in the program, like Molina, were abused or neglected when they children.

The program is successful in breaking the cycle of abuse and neglect, said Eric Schindler, president and CEO of Child & Family Resources. “Ninety-five percent of families we work with stay out of foster care,” he said.

Molina said she has learned about child development and techniques to maximize her children’s learning while minimizing stress that can come with parenting, thanks to family support specialist Emily Clifford. Clifford was laid off last week.

Clifford taught Molina ways of playing with children that encourage learning. She showed Molina how to defuse Diego’s temper. She connected the family with special education services to help with speech delays and other learning issues.

And Clifford provided them with counseling when the family was left stunned by two deaths.

In April 2007, Molina and her daughter were inside a store while Molina’s boyfriend and Diego waited outside. A car pulled up and the boyfriend, with Diego, who was 18 months old at the time, at his side, was shot dead in what Molina says was a case of mistaken identity. The shooter was never arrested.

In May 2008, Molina’s mother died from cancer, leaving Molina’s 9- and 11-year-old brothers in her care.

In December, Molina lost her job, and the family moved in with friends.

Healthy Families provided counseling after Diego and Diamond were diagnosed with post-traumatic stress disorder following the shooting.

“If it wasn’t for Healthy Families, I’d be lost,” Molina said. “They were always there for us.”

Pauline Haas-Vaughn, program director for Healthy Families at Child & Family, worries about the 600 families who are losing services in Tucson.

The agency has had to terminate most clinical services, including therapy, because of budget cuts.

“We have families that are actively involved in domestic violence and families dealing with severe depression and one mom who’s suicidal, but we can no longer provide those services,” she said.

With information and support, parents can overcome daunting obstacles, Haas-Vaughn said.

“Our parents want to be better parents,” she said. “They need the tools and skills to be able to do that.”

Lisa Molina, relaxing with her daughter, Diamond Teran,says Healthy Families has made her a better mother.

The Pinnacle Peak Pistoleros perform "Outlaws Outta Luck," a free comedy Wild West stunts show every evening at Trail Dust Town. Brendon Wellendorf (bottom), Jerry Woods (flying) and Heather Woods rehearse "Hell's Belle," which opens in April.

With 10-gallon hats and spurs at the ready, Tucson families are gearing up for a return to the Wild West.

There are plenty of events this coming rodeo week for rowdy ranch hands of all ages. Put on your bola tie and your fake handlebar mustache and check out these events:

• La Fiesta de los Vaqueros opens Saturday and runs through March 1 at Tucson Rodeo Grounds, 4823 S. Sixth Ave. Gates open at 11 a.m. Saturday, with Dodge Mutton Bustin’ and Justin Junior Rodeo at 12:30 p.m. ProRodeo Competition is from 2 to 4:30 p.m. Tickets are $12-$20. Go to www.tucsonrodeo.com for more information.

• Meet writer and Tombstone expert Jack Ziegler as he relates and enacts the events of the Gunfight at the OK Corral from 2 to 3:30 p.m. Saturday at the Pima County Public Library’s Himmel Park Branch, 1035 N. Treat Ave. Ziegler will share the “real” story of what happened between the Earp brothers and Doc Holliday and the McLaurys and Clantons. “It was like a misdemeanor arrest gone horribly awry,” Ziegler says of the infamous gunbattle. At issue was who was to control Tombstone, he said.

Ziegler’s love of shootout lore started at age 12, when he read “Tombstone: An Iliad of the Southwest.” The retired educator and Tombstone resident has researched the gunfight for nearly 20 years and has written and spoken widely on Territorial Arizona. Call 594-5305 for more information on the free event.

• Nothing says “yee-haw” like a bad guy getting blown up. Check out the daily Dragoon Street Wild, Wild West Stunt Shows, fast-paced comedy and action skits performed at Trail Dust Town, 6541 E. Tanque Verde Road. Shows are Mondays through Fridays at 6:30 and 7:30 p.m.; Saturdays and Sundays at 5:30, 6:30 and 7:30 p.m. Shows are free, and the cowboys gratefully accept donations. Go to wildweststuntshow.com for more information.

• Spend an afternoon with Baxter Black, the best-selling cowboy poet in the world, Sunday at 2 p.m. at Tohono Chul Park, 7366 N. Paseo Del Norte. This former large-animal veterinarian makes a living by shining a spotlight on the flaws and foibles of everyday cowboy life, the day-to-day ups and downs of people who live with livestock and work the land. Admission is $25 general and $20 members. For information, call 742-6455 or go to tohonochulpark.org.

• Children can make their own Western-style bandanna and paper bag vest to dress the part for rodeo fun at the Tucson Children’s Museum, 200 S. Sixth Ave., at 3 p.m. daily, Tuesday through March 1. On Thursday and Friday, kids can make stick ponies at 12:30 p.m. and play a game of horseshoes at 1:30 p.m. both days. Admission is $7 adults, $5 seniors and for ages 2-18. For more information, call 792-9985 or go to tucsonchildrensmuseum.org.

• The 84th Tucson Rodeo Parade kicks off at 9 a.m. Thursday. The parade starts at Ajo and Park avenues, heads south on Park to Irvington Road, west on Irvington to Sixth Avenue and north on Sixth to the Tucson Rodeo Grounds. Grandstand seating is on Irvington Road, and tickets may be purchased at booths near the grandstands for $6 for adults and $4 for children 12 and younger. Other viewing along the route is free. Go to tucsonrodeoparade.org for information.

• Branches of the Pima County Public Library are hosting special rodeo story times for kids. For locations and times of the free events, go to www.library.pima.gov/about/news/?id=1211.

• Get ready to pet a Clydesdale from 1 to 3 p.m. Thursday in the parking lot of the Flowing Wells Branch Library, 1730 W. Wetmore Road. Meet an 1,800-pound Clydsdale and learn about horses from Nancy Roahring of Step Up Into T.L.C. Roahring will also bring a smaller horse. There will be crafts and horse-related stories inside the library at this free event. Call 594-5225 for information.

• Try out your best chess moves Feb. 27 from noon to 3 p.m. at the 3rd Annual Rodeo Daze Chess Knockout speed chess tournament at the Valencia Branch Library, 202 W. Valencia Road. Players will face off through single-round elimination. Snacks are provided at the free event for kids and teens. Call 594-5390 for more information.

Nancie Roahring with Dillon, the therapy pony, and JJ, the Clydesdale.

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Tucson children at risk of being neglected, abused and ending up in foster care will feel the impact of state budget cuts after Child & Family Resources was forced to lay off social workers that help keep families together.

The agency this week laid off more than one-fourth of its Tucson employees after losing $7 million in funding from Arizona Department of Economic Security, said Colleen Bagnall, development director for Child & Family Resources.

DES announced the cuts in programs after the Arizona Legislature slashed its current fiscal year budget.

“We’re very concerned that these cuts … mean more children will end up in foster care, and child abuse and neglect will increase and, in the worst case scenario, there could be fatal injuries,” said Eric Schindler, agency president and CEO.

Child & Family Resources, 2800 E. Broadway, serves 38,000 children and families statewide.

Because of the DES cuts, the nonprofit agency that contracts with the state to provide services to families was forced to cut its Healthy Families program by 75 percent and other in-home service programs by 50 percent, Schindler said.

Healthy Families provides services to families with children from birth to age 5 who are at risk for neglect and abuse. About 85 percent of parents in the program experienced abuse or neglect in their childhood, and the program helps break the cycle, Schindler said.

In-home service programs provide education and support to families with children of all ages, most of whom are currently involved in Arizona’s Child Protective Services. The programs’ goal is to provide families with services needed to keep children in the home and out of foster care.

The programs help families develop anger management and basic parenting skills; offer information on child development and coping with stress; and connect parents with substance abuse treatment resources.

Schindler estimated the cuts will impact about 700 Tucson families and about 3,000 in the state.

He believes the state made the cuts “on the backs of the most vulnerable children and families.”

“This did not need to happen,” he said. “Experts in the field believe the money saved here is an illusion in that it will cost the state more in the long term. Keeping a child in foster care or incarcerated in juvenile corrections is 10 times more costly than these services.”

The programs work, Schindler said. “Ninety-five percent of families we work with stay out of foster care.”

Maxine Acevedo, 35, has spent six years helping vulnerable Tucson families as a family support specialist at Child & Family Resources.

Now this single mother with three sons is in need of help herself after losing her job this week.

She worries about the families that need help the most. “A lot of kids will go into CPS care,” Acevedo said.

She’s worried parents will abuse and neglect their children without the services Child & Family Resources provided.

“The more stress on the parents, sometimes it gets taken out on the kids,” she said.

Love of Reading Week also inspires children to dream, succeed

Doris Ford (right) reads a book Monday about Harriet Tubman to a second-graders at Ford Elementary School as part of TUSD's African American Studies' Read-In during Love of Reading week.

Doris Ford wants children of all races to know they can be anything they dream of.

The retired educator returned to the classroom Monday to read to students at Ford Elementary School, 8001 E. Stella Road, as part of Love of Reading Week.

“It’s important for all children to see diversity on all levels, and to know that everybody has something to contribute, regardless of ethnicity, race or age,” says Ford, 68.

Her résumé includes stints as a vice president at the University of Arizona, vice chancellor at Pima Community College and a Harvard dean.

Ford, who is not the school’s namesake, read to the second-grade class. The book was about Harriet Tubman, a runaway slave who led hundreds of other slaves to freedom through the Underground Railroad.

Ford then spoke of historic change in Washington, D.C., with the election of Barack Obama.

“When I mentioned his name, one African-American girl quietly pointed at her own skin color,” Ford says. “It was wonderful.”

Love of Reading Week is a national celebration that promotes an appreciation of literature among students and adults. As part of the celebration here, thousands of volunteers read to classrooms full of young, eager children.

This year, Love of Reading coincidentally fell in the same week that marked the 100th anniversary of the NAACP on Feb. 12.

In a symbolic gesture, Ronald Wilson, chief presiding judge for South Tucson, rounded up more than 100 volunteer readers to team up with the TUSD African American Studies Department. The volunteers, young professionals and college students, were assigned to a select group of schools.

“The illiteracy rate in communities of color is high,” Wilson says. “Going into the communities to read to children is a great way to reduce that rate. I wanted to use this opportunity to expose young children to reading.”

In addition to Wilson’s group of volunteer readers, Sonia Gissart of TUSD’s African American Studies enlisted about 60 volunteers from Tucson’s African-American community.

“This year has been super,” Gissart says. “The African-American community really came together for the cause and was eager to participate.”

Donna Liggins, president of the Tucson Branch of the NAACP, says she is deeply grateful for all the work that Wilson and Gissart put into finding volunteers to read to children. She says the NAACP holds strong educational values and is committed to helping communities succeed in raising educated children.

“If you don’t know how to read, what can you do?” Liggins says. “Without the ability read, it is hard to become a productive member of society.”

She is hopeful that communities will continue to take an interest in children’s education year-round while fighting stereotypes and other social ills that could have an adverse affect on youth.

Says Liggins, “The NAACP fights for our children to be and remain educated in society.”

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A QUEST FOR READING

More than 10,000 students in 55 elementary schools throughout Pima Country participated in the first “Qwest for Education” with local literary program Reading Seed.

The Qwest Foundation donated $10,000 to Reading Seed in an effort to help the event that almost didn’t happen.

“We were realizing that we had some expenses and previous companies were unable to follow through with their pledges,” says Betty Kalil Knott, executive director of Reading Seed. “Qwest stepped up at the last minute to put on the show.”

More than 100 Reading Seed volunteers took part in assemblies throughout the week.

“Instead of hitting one classroom, we are trying to hit all the kids during the assembly at one time” Knott says.

Along with Qwest, such local and national businesses as Bookmans, Borders Books, Fair Wheel Bikes, Ajo Bikes and eegee’s donated items to make Love of Reading Week a memorable experience for the children.

Students who completed the Reading Seed program will be given a “Reading Champion Medal” in front of their classmates during the school assemblies. The top 20 students will receive bikes for their stellar performance in the program.

No student will go home empty handed: Donated books will be given to children who participate in the assemblies.

By Gabrielle Fimbres, Austin Counts

Alexis Dorey, 11, reads at home with her dogs Charlie (left) and Gizzmo. Alexis is taking part in a new Humane Society book club.

Alexis Dorey is lost in the vast Alaskan tundra, with wolves as her only companions.

The fifth-grader at Holladay Intermediate Magnet School in Tucson is vicariously living the life of a 13-year-old Eskimo girl in “Julie of the Wolves.”

The book is the first selection in the Humane Society of Southern Arizona’s new Dog Gone Good Book Club. The free program is open to kids ages 10-14. The Humane Society is registering readers now for the book club’s first meeting Feb. 28.

Alexis is racing through the pages, eager to see how Julie survives.

“It’s amazing so far,” the 11-year-old said of the fiction book, written by Jean Craighead George in 1972.

Alexis loves to read with her dogs nearby: Gizzmo, a 5-month-old Shih Tzu and Charlie, a Wheaton terrier mix. She said the club is perfect for her, combining her loves of reading and animals.

Her heart especially goes out to homeless animals. “I like how the Humane Society rescues everything from geese to turtles,” Alexis said.

Heather Dorey said the book club and other programs for kids at the Humane Society are ideal for daughter Alexis, who wants to be a veterinarian.

“We got her involved to get her exposed to animals,” she said. “The book club is perfect because she loves to read.”

Heather Dorey predicts the program will inspire kids to read.

“It gives kids that might not be very interested in reading an opportunity to read for fun and to get together and talk,” Dorey said.

Said Alexis’ dad, Blake Hall, “I think it’s good to get involved just to learn basic animal responsibility.”

Through the book club, kids can discuss their thoughts and feelings about animal-related topics found in fiction, nonfiction, documentaries and current events, said Inge Koopman-Leyva, manager of children’s programs at the Humane Society.

The book club, which meets every other month, can help kids understand the importance of caring for animals, she said.

“Kids are sitting in front of TVs and video games too much,” Koopman-Leyva said. “The purpose of the club is to encourage kids to read, and what better way than to bring animal lovers and book lovers together?”

For more information, call 881-7405 or go online to www.hssaz.org.

Story Time for Pets

Reading out loud can be pretty scary stuff for some young children.

So why not try reading to a dog?

The Humane Society of Southern Arizona is launching Story Time for Pets on Feb. 28, from 1 to 2:30 p.m. The program is for children ages 5-9.

“It’s to encourage kids that are shy about reading out loud,” said Inge Koopman-Leyva, manager of children’s programs at the Humane Society.

A dog is never judgmental and is always a good listener, she said.

Kids can read books about animals to a therapy dog that is accompanied by its trainer, as well as listen to stories. The free story time will meet every other month at the HSSA Education and Cruelty Prevention Resource Center, 3402 E. Kleindale Road.

For information and to reserve a spot, call 881-7405 or send e-mail to ikoopmanleyva@hssaz.org.

Megan Curtis, 5, reads to therapy dog Boomerang, a 3-year-old Australian cattle dog, at the Himmel Park Library. The Humane Society is starting a similar program this month.

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IF YOU GO

What: First meeting of the Humane Society of Southern Arizona’s Dog Gone Good Book Club, for ages 10-14

When: 10 a.m. to noon Feb. 28. Sign-ups are ongoing.

Where: HSSA Education and Cruelty Prevention Resource Center, 3402 E. Kleindale Road

Price: free

Info and registration: 881-7405 or ikoopmanleyva@hssaz.org

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SUGGESTED READING

Some popular animal books for children, recommended by the Pima County Public Library:

Ages 5-9

• “Officer Buckles & Gloria,” by Peggy Rathmann

• “Dear Mrs. Larue: Letters from Obedience School,” by Mark Teague

• “Eight Animals Play Ball,” by Susan Middleton Elya

• “Splat the Cat,” by Rob Scotton

• “Skippyjon Jones,” by Judy Schachner

• “Tacky the Penguin,” by Helen Lester

• “Way Out in the Desert,” by T.J. Marsh & Jennifer Ward

• “Wild about Books,” by Judy Sierra

Ages 9-12

• “The Black Stallion,” by Walter Farley

• “Catwings,” by Ursula K. LeGuin

• “Hank the Cowdog,” by John R. Erickson

• “Julie of the Wolves,” by Jean Craighead George

• “Shiloh,” by Phyllis Reynolds Naylor

• “Warriors, the New Prophecy” (series), by Erin Hunter

Cozy and safe, with the scent of pancakes on the griddle.

That’s what home means to Noah Deitch, a seventh-grader at St. Gregory College Preparatory School.

For Sahuarita High School junior Kristen Martin, home means rising above the violence and fear of the past into a promising future.

Noah, 12, and Kristen, 17, are the Tucson winners of Arizona Theatre Company’s AMERICA PLAYS! essay contest, held in conjunction with the production of “A Raisin in the Sun.”

The play, which tells the story of the multigenerational Younger family living on Chicago’s South Side in the 1950s, runs through Saturday.

To reflect the themes of the play, students were asked to write an essay that answers, “What do home and family mean to me?”

Noah won in the middle school level.

“We watch baseball, and then jumping up and down like six monkeys with five bananas, we root for our team,” he wrote. “Our house shakes as if in an earthquake; we hug each other and cheer when our team wins. Home is getting to my nice cozy bed: the memories of the past day keep coming in my head, and I fall asleep soundly. I wake up and hear the crispy pancakes in the frying pan.”

ATC associate artistic director Samantha K. Wyer said, “Noah’s description of his family life makes you feel like you are right there with his family.”

Kristen is the winner in the high school category. She wrote about being the child of divorce, and of suffering abuse until recently, when a stepfather joined the family.

“My stepdad has cleansed the wounds of our past and in turn gave us a family that is loving, and with this family I have now a home,” she wrote.

Said Wyer, “Kristen’s evocative writing style illuminated her family’s struggle to come to terms with the past and move forward together toward a bright future.”

They received tickets for their families to see “A Raisin in the Sun” and a chance to meet the actors along with other prizes from 92.9 The Mountain.

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THE WINNING ESSAYS

Here are the essays written by the Tucson winners of the Arizona Theatre Company’s AMERICA PLAYS! essay contest, held with the production of “A Raisin in the Sun”:

“Home and Family”

by Noah Deitch, 12

St. Gregory College Preparatory School, seventh grade

What is great about my family? It is all the home-style meals, going to the movies, family vacations, playing various sports, just staying in the pleasure of my home, playing a board game, or throwing a football around. We watch baseball, and then jumping up and down like six monkeys with five bananas, we root for our team! Our house shakes as if in an earthquake; we hug each other and cheer when our team wins.

Home is getting to my nice cozy bed: the memories of the past day keep coming in my head, and I fall asleep soundly. I wake up and hear the crispy pancakes in the frying pan. My head snaps up like a mousetrap that caught a mouse. I sprint to the kitchen and see my family eating pancakes with maple syrup. We go around asking how everybody slept.

When breakfast is over, my siblings and I pack up and get ready for school. My dad takes me every morning and drops us off at our destinations. Right before I take off running to play with my friends, my dad always says “Treat everybody with respect.” Saying this to me helps me socially. My family and home are the greatest, and I am very thankful that I am lucky enough to have them.

“What Home and Family Mean to Me”

by Kristen Martin, 17

Sahuarita High School, 11th grade

It is not what my family is to me now that makes my present life so special, it is the way my family used to be that makes my family all the more meaningful to me today.

For a deeper understanding, one must look into my past. As a young victim of divorce, my family was abruptly torn apart barely a year after I was born. I had never known a full family setting. It was always survive the school week with my mother and two siblings, then be dragged into the visitation rights every other weekend with my father.

My meaning of family was always simple: survive. Survive through the week, block out the weekend. Families are supposed to be welcoming and loving, but not mine. We fought constantly with each other; I was always in a battle physically and mentally throughout my childhood. Then when I thought it would all become better, visitation rights crept up, and I was subjected to an abusive father.

I couldn’t complain though; I thought that was how families were supposed to be. And our so called “home,” the building with my mother, or the numerous hotel rooms our father lived out of, was just another place to survive. My “family” was further callused when my father went to jail. As harsh as it may seem to say, that was actually a true blessing to my troubled life. For now we were free to form a new life.

We all became changed, most importantly my mother. My family, and the meaning of it abruptly changed again about a year ago, when I obtained a stepfather.

Now the blessing of my new family of today can be seen. I feel the word “complete” gracefully loom over me at all times and encase me in a loving shawl of tranquility. My stepdad is the new adhesive that holds us all together now. He has made my once malleable depressed mother into a strong, happy woman, and in turn, made my life complete. I now feel accepted in my family, a trait that was unknown in my past. I can fully appreciate the blessing of my family now because of the harsh past I had before.

Now, in my new family, I no longer have to survive: I live. I no longer fear the weekends: I look forward to them. I no longer am abused: I am cherished.

My stepdad has cleansed the wounds of our past and in turn gave us a family that is loving, and with this family I have now a home. It is easy to see that my reformed family, and my home along with it, means more to me than the world.

Girl Scout Danica Brown, 15, reads in one of the cozy corners at Bookmans Low Lounge at the Sahuaro Girl Scout Council Resource Center. The Scouts have transformed an unused room into a colorful, relaxing spot.

The dusty old room was once filled with outdated textbooks and mounds of stuff no one seemed to care about.

But after a serious makeover, it is now an inviting, comfy spot for girls looking for a place to do homework, read, e-mail friends or just relax.

“I adore this room,” Danica Brown, 15, said of the new Bookmans Low Lounge at the Sahuaro Girl Scout Council, 4300 E. Broadway.

“It’s important for girls to have a place to come and hang out and relax and have fun,” Brown said.

The spacious room was transformed with help from Bookmans, which donated $3,000 to buy furniture and other items and $2,000 in services and books.

It is named after Juliette Gordon Low, who founded the Girl Scouts in 1912.

The room, stocked with hundreds of books to be loaned out, computers and cozy chairs, is free and open to all girls ages 5-17, not just Scouts.

Danica, who has been a Scout since she was in second grade, hopes the room inspires girls to develop a love of literature.

“It’s a safe place where you can find the joy of reading,” said the Academy of Tucson High School sophomore.

Helping to create the Low Lounge were Kristen Culliney, Katie Gorenflo and Kristen Cure, who work and intern with the Girl Scouts.

Before the transformation, the room held “a whole lot of nothing,” Culliney said.

They developed an idea for an inviting room for girls, perfect for book club meetings, yoga classes and troop sleepovers, as well as a place where girls could hang out after school and during the summer.

“If a girl needs a place where she can check her e-mail or or do her homework or a have a place to go where they won’t get in trouble, they can come here,” Culliney said.

Families are invited to a grand opening celebration Saturday (see box.) The lounge will be open Mondays through Thursdays from 8:30 a.m. to 5:30 p.m., and 8:30 a.m. to 3 p.m. Fridays. Organizers hope to expand the hours.

Bookmans partnered with the Girl Scouts as part of an effort to promote literacy in the community, said Tamara Jones of Bookmans.

“We’re honored to have the opportunity to work with young girls and share the passion of reading,” she said.

The Girl Scouts are seeking donations of additional items to complete the room. Call 319-3170 for information.

Danica Brown vacuums the floor at Bookmans Low Lounge as she helps the Sahuaro Girl Scout Council prepare for grand opening festivities.

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IF YOU GO

What: Grand opening celebration of Bookmans Low Lounge

When: 10 a.m.-1 p.m. Saturday

Where: Sahuaro Girl Scout Council Resource Center, 4300 E. Broadway

Price: Free and open to all, including those who are not Scouts

Info: 319-3170

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Got cookies?

Can’t wait to get your hands on some Thin Mints?

Girl Scout cookies will be available in Tucson for $4 a box starting Feb. 14. Sales benefit the 13,000 Scouts in the the Sahuaro Girl Scout Council. Call 327-2288 for information on where to buy cookies, or go to www.ilovegirlscoutcookies.org.

Curtis Alan Kiwak watches as several of his preschool students at the Southwest Education Center work on their art projects.

With a swirl of brightly colored paint, Macaylah Jessie turns a blank sheet of paper into a glorious rainbow.

“I like making rainbows,” says the 4-year-old preschooler at Southwest Education Center, 6855 S. Mark Road.

“My other favorite things to paint are cats and dogs. I like cats and dogs so much.”

At the other end of the table, Chris Partidatells a story with paint.

“It’s a man covered with blankets,” Chris, 5, says. “He’s scared about a bear.”

And Nathanael Gonzalez takes a moment to dream up his latest tempera masterpiece.

Nathanael, 5, is one of several young artists in a preschool class for low-income Tucson children with works on display at “The Child In Art: Eyes Wide Open,” an exhibit at The Drawing Studio Gallery, 33 S. Sixth Ave.

The exhibit is open through Jan. 31 (see box).

Twenty-six drawings by students in Curtis Alan Kiwak’s class are on display, along with several by Kiwak, who is also an artist.

Seeing their artwork framed and on display has given a boost to the children, Kiwak said.

“They feel really good about themselves,” he said. “It’s important for kids to be able to express themselves through art.”

The children are part of the Parent and Child Education (PACE) Early Childhood Preschool Program at the school. The program, which prepares low-income children for kindergarten, is one of 28 PACE programs in the Tucson Unified School District.

Kiwak, who has taught preschool for 26 years, dreamed up the project and paid for the framing.

He incorporates art into his teaching nearly every day.

Last week in the classroom, children took turns working on math skills with assistant Pat Doe, building an imaginary city on the rug and creating pieces at the art table or on easels.

“I give them a lot of vocabulary with their artwork,” Kiwak said. “I talk about artists who do illustrations in books. I’m really into storytelling.”

Kiwak teaches kids, at a level they can understand, about some of the masters. He shows them his work. Some days, he has them copy his style. Other days, he copies theirs.

Kiwak said art boosts literacy, science and math skills and improves socialization.

“There’s a lot they discover just playing with paint,” Kiwak said.

The socialization is evident.

Macaylah and her friend, Giselle Aubrey, 5, painted side by side. They helped one another carry paintings to the hall to dry. By the end of the morning, paintings lined the hallway.

And for kids, art is just fun.

“They’re not given time to play,” Kiwak said. “Art should be play as well as telling stories.”

Art experiences in public schools “get whittled down because schools have to meet certain goals,” Kiwak said. But he believes art is critical in educating the whole child.

“If I teach with the whole child in mind, they take those experiences as they grow and learn,” he said. “Hopefully they are the better for it.”

Joan Ashcraft, director of fine arts and Opening Minds Through the Arts (OMA) at TUSD, said research shows the arts help children to learn.

“We know from our research from Opening Minds Through the Arts that students make gains in reading, writing and math when exposed to the arts, and the younger the better,” Ashcraft said.

OMA integrates music and visual arts into the curriculum.

She said exposure to the arts helps the 100 billion brain cells and neurons make connections.

“Exposure to music and the visual arts helps the brain grow and expand,” she said. “When children create a piece of artwork, those experiences help sculpt the brain.”

She said Kiwak is offering children a valuable lesson.

“He is teaching the children things they will always remember through this art form,” she said.

Alexis Rivera, 5, works on her art piece during preschool in Kiwak's class. Art is used to help children learn other subjects as well.

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IF YOU GO

What: “The Child In Art: Eyes Wide Open” exhibit, with art from preschool students at Southwest Education Center, along with works by their teacher, artist Curtis Alan Kiwak

When: noon to 5 p.m. Tuesdays through Saturdays through Jan. 31

Where: The Drawing Studio Gallery, 33 S. Sixth Ave.

Price: free

Info: 620-0947

Jeanne Fischer, 82, (left), plays with Israel, 9 months, and visits with Chrystal Pacheco, Israel's mom, at Fischer's home on the Northeast Side. Jeanne was Chrystal's mentor through Aviva Family Services when Chrystal was a teenager and going through family troubles. Chrystal is grown now with children of her own and still keeps in contact with Jeanne.

With both parents in prison, Chrystal Pacheco bounced from relative to relative as a teen.

The one constant in the life of this child living in foster care was her mentor, Jeanne Fischer.

“Jeanne was my safe place,” says Pacheco, now a 23-year-old working mother of two. “She’s like a best friend to me. Without her, I don’t know what I’d do. She’s still here for me. She’ll always be here for me.”

Pacheco is all grown up. But the relationship that started with this retired teacher and great-grandmother when Pacheco was a young teen still thrives.

Fischer, now 82, became involved in Pacheco’s life when she read in a newspaper a decade ago that Pacheco’s father was injured in a prison stabbing.

Fischer had taught Pacheco’s father when he was in fourth grade, and she wanted to help the family.

The mentoring became official when Aviva Children’s Services asked Fischer if she would guide Pacheco and her brothers.

The agency, which provides mentoring and other volunteer services to abused and neglected children involved with Child Protective Services in Pima County, has 22 mentors, and needs more (see box).

As a mentor, Fischer and her husband, John, took Pacheco to Colossal Cave, Biosphere 2 and Tubac. “We went to a lot of interesting places that I never would have seen,” Pacheco said.

Fischer tutored Pacheco in school. And she is always there to listen. “She likes to get stuff off her chest,” Fischer said. “She needs to talk.”

The relationship benefits both women. “It makes you feel there’s something good you can do to help somebody else,” Fischer said.

Pacheco and her husband are raising sons Vincent, 6, and Israel, 9 months. Fischer enjoys spending time with the family.

Before Vincent started school, Fischer helped him with letters and numbers. And she enjoys watching Israel grow.

“He wasn’t crawling like that the last time I saw him,” Fischer said as she played with the baby on the floor of her Northeast Side home.

Pacheco enjoys her relationship with Fischer. “She doesn’t pressure me,” she said. “She’s the only person who doesn’t.”

Susan Kelly, volunteer coordinator of the mentoring program at Aviva, 1735 E. Fort Lowell Road, said mentors take on a special role with children, who often bounce from placement to placement.

“Kids lose so much when they go into foster care,” Kelly said. “They lose their family. They have loss after loss. To have that mentor in their corner is so important.”

Kelly said about 2,800 kids live in foster care in Pima County. Aviva, a nonprofit agency, is the volunteer component for CPS, helping about 2,000 kids a year.

Aviva provides mentoring and tutoring; Bags for Kids, where volunteers sew duffel bags; and the Life Book Project, where volunteers help children document their lives. The agency also provides clothing, books, food, diapers and other items.

Older foster children know that the adults in their lives are most often paid to help them, while a mentor is there because they want to make a difference, Kelly said.

There’s Jesus, 15, for example. Bonnie Demorotski, 58, coordinates volunteer and community resources at Aviva. And she has mentored Jesus, for three years.

Jesus is an orphan from Mexico whose mother committed suicide. He bounced between the homes of relatives in Mexico and the U.S. until he was abused. He ended up in CPS and lives in a group home here.

While this is not the role of most mentors, Jesus spends weekends with Demorotski and her husband in their home. “I just like hanging out with Jesus,” said this Tucson grandmother. “I will always be in his life.”

Jesus has had six caseworkers in three years and has been in several homes. He would like to be adopted, “but nobody’s going to adopt a teenager,” Jesus tells his mentor. “Nobody wants us.”

He struggles, living with nine other kids, some as young as 2.

“When he goes to Bonnie’s, it’s down time for him,” Kelly said.

Demorotski and her husband take him to the movies, the theatre, to dinner. Jesus calls Demorotski from the group home and says, “You’ve got to get me out of here.”

“It tears my heart out,” she said.

Jesus, who dreams of being an airplane mechanic, loves drawing, painting and playing guitar. When he graduates from high school, Demorotski will give him her car as a gift.

“I just love him,” she said. “I like that I make a difference in his life.”

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BECOME A MENTOR

Aviva Children’s Services is seeking mentors for abused and neglected children in Tucson.

Volunteers must:

• Make a minimum one-year commitment, spending at least three hours per week with the child

• Be at least 21 and able to drive

• Undergo fingerprint clearance and about 20 hours of training

Potential mentors can find out more about the program at the Aviva Mentor Celebration, Jan. 24 at 10 a.m. at Old Tucson Studios, 201 S. Kinney Road. Prospective mentors must register by calling Susan Kelly at 327-6779 Ext. 11.

For more information, go to avivatucson.org.

July Ruiz plays "Postess," delivering party invitations to the characters in "Playhouse Disney Live!"

Kids can dance and sing along with Mickey Mouse, Pooh, Tigger and other friends Friday at “Playhouse Disney Live!”

The stage production, based on Playhouse Disney television shows for preschoolers, will be performed at 1:30 and 6:30 p.m. at the Tucson Arena.

The show spotlights characters from “Mickey Mouse Clubhouse,” “Little Einsteins,” “Handy Manny” and “My Friends Tigger & Pooh.”

July Ruiz, 21, plays the role of Postess in the show.

“I deliver the mail to the Playhouse Disney characters,” Ruiz said in a telephone interview. She delivers invitations to Mickey’s musical party, where each guest is asked to bring a song.

Characters go on an adventure to find their perfect song, and the audience gets to help, Ruiz said.

She said the show is interactive, with kids and parents participating in all of the fun.

“Kids really get into it,” Ruiz said.

“For most kids, it’s the first time they see a stage show,” she said. “How fun to see your favorite characters come to life. We want kids to stand up and dance and parents to have a great time watching their kids have a great time.”

Ruiz, a native of Bogota, Colombia, has performed the show in 25 states since joining the cast in August.

“The most rewarding part of my job is to see the children smile,” Ruiz said.

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IF YOU GO

What: Playhouse Disney Live!

When: 1:30 and 6:30 p.m. Friday

Where: Tucson Arena, 260 S. Church Ave.

Price: $38-$16

Info: 321-1000, ticket master.com

Transplant study may offer hope for people with cerebral palsy

Chloe Levine, 2 1/2, while visiting Cord Blood Registry's Tucson facility.

The cheery toddler runs down the hall, waving her arms above her head as she reaches her target.

Chloe Levine, 2 1/2 , jumps into the arms of her dad, Ryan Levine, and the two share a snuggle.

“Running like that with two arms up in the air was impossible before,” says Chloe’s mom, Jenny Levine, 32.

Chloe, who has cerebral palsy, was transplanted with her own stem cells on May 27, 2008, as part of a study at Duke University.

The cells were collected at birth from Chloe’s umbilical cord and frozen, months before her parents knew there was anything wrong with their precious daughter. They were stored in Tucson at Cord Blood Registry, near Tucson International Airport.

Scientists debate whether stem cells can help children such as Chloe, or if the improvement in motor skills would have occurred anyway.

But the Levines believe Chloe’s improvement since the transplant is nothing short of a miracle.

“She’s normal now,” says Jenny Levine, as her daughter colors a picture of Elmo with a bright pink crayon. “She’s doing everything a normal 2-year-old does.”

When Chloe’s parents were expecting her sister, Shayla, now 5, they investigated the possibility of storing her cord blood. But they could not afford the initial $2,000 investment at the time.

When pregnant with Chloe, Jenny Levine was determined to store her second child’s cord blood.

“It was one of the first things we decided,” she said. “There have always been two things in life that scare me the most, cancer and car accidents. We looked at it as a life insurance policy.”

The family was living in Pinetop when Chloe was born. They now live in Denver, where Jenny stays home with the girls and Ryan, 34, is in the cell phone business.

Jenny had a difficult pregnancy, and Chloe was born a month early.

“But every indication was that she was just fine,” she said.

At 9 months, the couple worried that Chloe could not hold her bottle. “Her little right hand was always in a tight fist,” Jenny recalled.

They took her to a pediatrician, who didn’t seem concerned.

“But my instincts told me something was not right,” Jenny said.

At her year check-up, Jenny told the pediatrician she was not crawling, and didn’t put weight on her right side. A brain scan showed Chloe had hemiplegic cerebral palsy, and that she suffered a stroke in utero, probably early in pregnancy. Some of Chloe’s brain tissue, Jenny said, stopped developing.

The family consulted a Phoenix neurologist. “I told him we had cord blood stored, and asked if there was any possible use,” Jenny recalled. “He said, “No, it won’t benefit you.’ ”

They were told Chloe would need physical, occupational and speech therapy throughout her childhood. ”We trusted what he had to say, accepted what we had to do and we went home,” Jenny said.

In December 2007, the family heard about Dallas Hextell, a Sacramento boy with cerebral palsy who had been infused with his own stem cells as part of the study at Duke, and was responding well.

“I immediately got in contact with Duke,” Jenny said. The hope, she said, is that the infusion of stem cells could cause brain tissue to regenerate, improving Chloe’s mobility.

“They will not guarantee you anything,” Jenny said, “The worst that can happen is nothing happens.”

“We didn’t have any expectations, but we wanted to know we had tried everything,” Ryan said.

Last May, Chloe’s stored stem cells were tested and sent to Duke, where she was infused through an IV in her arm. Her parents say they saw a nearly immediate change.

“She woke up the next day and she was a different kid,” Jenny said. “Two days later, in the car, she said her first word, ‘Coco,’ her nickname.”

At her grandparents’ house a couple of days after infusion, Chloe was able to use her right foot to push the pedal of a toy tractor, something she had not been able to do before.

The family will return to Duke in May or June for evaluation. Dr. Joanne Kurtzberg, the Duke transplant specialist who treated Chloe, is not granting media interviews, and the study is still in it’s early stages.

But the Levines believe the transplant is saving their daughter.

“It has been life-changing in every aspect,” Jenny said. “She no longer needs speech therapy, and we are seeing improvement every day. It’s amazing.”

AAP cord blood recommendations

When deciding whether to bank your baby’s cord blood, discuss the options with your obstetrician. Here is what to consider when deciding which company to select, according to the American Academy of Pediatrics:

• Does the company bank for personal and family use?

• Institutional Review Board-approved protocols should be in place, including annual disclosure of the financial interest and potential conflicts of interest.

• Financial viability and stability of the company should be considered.

• Physician should disclose any potential conflict of interest.

• Company should have an informed consent process in place and require the parent to sign an informed consent.

• Cord blood banks should comply with national accreditation standards developed by the Foundation for the Accreditation of Cellular Therapy, the U.S. Food and Drug Administration, the Federal Trade Commission and similar state agencies.

Chloe Levine tries to keep up with big sister Shayla, 5, as Dondi Pulse-Earle (left) leads the girls' parents, Ryan and Jenny, on a visit to Cord Blood Registry's Tucson facility.

This photo of Chloe and her family hangs in the hallway at CBR.

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Scientists study if infusion of own stem cells fixes damage

Kristen Swingle, vice president of laboratory operations, talks about the processes that Cord Blood Registry uses to store cord blood from newborns. The facility, near Tucson International Airport, is the largest private cord blood bank in the world.

Last spring, Chloe Levine dragged her tiny right foot as she struggled to walk.

The toddler’s right hand remained clenched in a fist. She did not speak, and her eyes were glazed over.

Cerebral palsy caused by a stroke in utero prevented Chloe from developing like other children.

But after an experimental infusion of her own stem cells – collected from her umbilical cord at birth, frozen and stored in Tucson – Chloe, 2 1/2, is running, kicking a soccer ball and coloring.

“It’s my prayer that some day we can erase the diagnosis,” said Chloe’s mom, Jenny Levine, a former Pinetop resident who lives in Denver. “Even if that doesn’t happen, she’s come a heck of a long way.”

Chloe, who is part of a trial at Duke University, is one of 33 patients who last year were infused with their own stem cells that had been taken from their umbilical cords and stored in Tucson at Cord Blood Registry. It is the largest private cord blood bank, storing a quarter of a million units from around the world.

The number of transplants of a person’s own stem cells through CBR tripled in 2008, as more transplants are conducted in trials in regenerative medicine. Scientists are studying whether an infusion of a person’s own cells collected at birth can repair damaged tissues.

“We really look at what we do as providing hope for longer, healthier lives,” said Tom Moore, CBR’s founder and CEO.

“When we are talking about regenerative medicine, we are talking about cures.”

Parents spend $2,000 initially for cells to be collected and stored, and about $125 a year for maintenance.

Use of the cells is not politically controversial, as in the case of embryonic stem cells.

But marketing strategies of businesses that store the cells are. The American Academy of Pediatrics, which many concerned parents turn to regarding the health of their child, recommends privately banking cells only if an ill older sibling might benefit.

Storing cord blood as “biological insurance” should be discouraged because there is no scientific data to support that transplanting a person’s stem cells works, it says.

“Private cord blood banks target parents at an emotionally vulnerable time when the reality is most conditions that might be helped by cord blood stem cells already exist in the infant’s cord blood,” according to the academy’s Web site.

The academy strongly recommends donating cord blood to a public bank. Donations, which cannot later be retrieved by the family, can help others battling illness.

No public bank exists in Arizona. But Tucsonans can donate through Cryobanks International in Altamonte Springs, Fla. (See box.)

Additionally, some in the scientific community question whether patients like Chloe were likely to improve without the transplant.

Cord Blood Registry officials call the academy’s statement “outdated” at a time when the science of cord blood stem cells is changing and expanding rapidly.

They also say they are educating parents, not encouraging them to bank based on fear.

Cord blood stem cells are being used experimentally to treat brain injuries like Chloe’s, Type 1 diabetes, heart disease and other illnesses. CBR officials say the cells potentially hold the cure for more than 70 diseases.

Moore and his staff say they believe one day a person’s stem cells might be used to cure everything from hearing loss to knee injuries.

“I think some day, kids will talk about stem cell transplants like getting a flu shot,” said Dondi Pulse-Earle, who coordinates transplants at CBR. “It will be, ‘Hey, have you used your stem cells yet?’ ”

Nationally, there are about 30 private banks. CBR started in 1992 after Moore said he discovered the best research was conducted by University of Arizona immunologist David Harris.

Harris, who is also CBR’s scientific director, has been researching stem cells since 1989 and started the bank here with his son’s cord blood.

The bank is now housed in a 60,000-square-foot state-of-the-art facility near the Tucson International Airport. Tucson was also selected because of few instances of natural disasters that could shut down the airport or the bank.

Harris agrees public banking is needed. One operated in Tucson for a decade, until funding ran out, he said.

The state was expected to start public banking again this year after the Arizona Legislature approved $5 million over five years to fund the project, Harris said.

But the bank was a victim of the budget crisis and funding was cut, he said. He predicts it will be years before a public bank will be funded.

Public banks are especially needed for minority patients and those of mixed race, who are less likely to have stored cells privately, he said.

Harris said the American Academy of Pediatrics has put parents in a tough spot by only recommending public banking.

“If you’re going to tell me to donate, you need to make sure I can donate,” he said of the limited public banks available.

While 22 states are approved for public banking, only six collect donated cord blood stem cells from births at specific hospitals, Harris said.

But Dr. William T. Shearer, the professor of pediatrics and immunology at Baylor College of Medicine who helped write the academy’s position on private storing, said families can donate to public banks, but they must be proactive, finding a bank in a different state.

Shearer said the academy’s position is not outdated.

He called claims of being able to fix future disease and injury using a person’s own cells “a little far fetched, frankly.”

But he said the uses of donated cells are immediate and greatly needed.

Private banks argue that transplants with a person’s cells are more effective and safer. But Shearer said effectiveness has not been proved.

“This goes beyond medicine and into marketing,” he said.

But Harris argues the use of one’s own stem cells has tremendous potential to cure.

At UA, he has conducted research into how stem cells affect cerebral palsy and other traumatic brain injuries, as well as Type 1 diabetes.

Harris found that cord blood stem cell transplants cured mice of diabetes over the span of their life, about two years.

A study of 23 children with Type 1 diabetes at the University of Florida has shown improvements when they are infused with their own stem cells. Some children are making their own insulin, Harris said.

What is not known is whether the disease will reoccur, he said.

While much about regenerative medicine is unknown, Harris said changes in patients make it impossible to dismiss.

“When you see enough patients benefiting, you say, ‘Something’s going on here.’ ”

Harris agreed there are probably private companies that market to parents’ fears, but he says CBR is not one of them.

His advice to expectant parents: “Make an informed decision early on. You only have one opportunity. Make a decision and don’t look back. You don’t want to do this out of fear. You want to consider it if you think it could be a viable resource that you can call upon should you need it.”

Tucson parents Heather and Gary George had no doubts when it came to storing their children’s cord blood.

They have stored stem cells of children Isabelle, 2 1/2, and Jasper, 16 months, and plan to store the cells of their third child, due Jan. 27.

“I’m a nurse, and I know about stem cells and the fantastic opportunities available in the future for therapies,” said Heather George, 32. “Knowing what I know, I could not have chosen not to save the cord blood.”

They chose to store at CBR because of the few major weather disasters that could shut down the facility. They also like that the blood does not have to travel across the country.

She knows it is unlikely her children will ever need the cells.

“But heaven forbid something happen, how awful that would be if we had not saved them,” she said.

For some parents, the peace of mind they get saving cells is worth the investment, said Dr. David Beyda, a medical ethicist, critical care doctor at Phoenix Children’s Hospital and a UA clinical professor of pediatrics.

Beyda is not familiar with CBR, but he spoke in general of ethical concerns regarding private cord blood banking.

“What’s it worth to you as a parent? Is it peace of mind? If it is, then do it,” Beyda said. “If you think it’s a guarantee (of a cure for any future illness), then be cautious.”

Ethical concerns are raised, he said, when companies play on the fears of expectant parents through advertising.

Marketing techniques that use the potential for guilt are unethical, Beyda said.

“What happens if your child at age 5 gets leukemia? Do you want your child to die?” is the marketing strategy used by some companies, he said.

Beyda said the number of transplants nationally is very small, and viability as a long-term fix is unknown.

“When you look at scientific information, it’s extremely sparse in terms of evidence that it’s beneficial,” he said.

The American College of Obstetricians and Gynecologists released guidelines last year, recommending that health-care professionals provide balanced information on private and public banking. But its Web site says chances are “remote” that cells from a baby’s banked cord blood will be used to treat that child or another family member.

CBR, however, says there is “solid scientific evidence” from animal studies that transplants can induce healing and that the uses are likely to expand.

In addition to the 33 stem cell transplants through CBR last year where patients received their own cells, another seven transplants were used to treat siblings, according to CBR.

Moore, of CBR, said the possible uses are far reaching.

“If you can provide a positive outcome in that child and make them whole again, you can have a significant impact,” he said.

Umbilical cord blood is prepared for storage at minus 196 degrees Celsius at Cord Blood Registry.

Employees process cord blood samples at Cord Blood Registry. The company stores frozen cord blood samples from newborns.

Kristen Swingle, vice president of laboratory operations, talks about the kits that are available to their clients at Cord Blood Registry.

Heather and Gary George stored the cord blood of their daughter, Isabelle, 2 1/2, and son, Jasper, 16 months, at Cord Blood Registry in Tucson. They also plan to store the cord blood of their third child, due Jan. 27.

Chloe

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CORD BLOOD COLLECTION

After a baby is born, the umbilical cord is cut and most often tossed in the trash.

But blood remaining in the cord is rich in stem cells, which can possibly be used to treat illness and tissue damage.

When a parent contracts with a company to collect and store the cells for a fee, the blood – usually about a 1/2 cup – is removed from the cord by a physician or midwife. A courier picks up the blood and takes it to the airport, where it is flown to a private cord blood bank. The only bank in Tucson is Cord Blood Registry.

At CBR, blood is processed through a procedure involving 140 steps. Cells are separated through centrifuge, and about 1 billion stem cells are collected, amounting to the size of an eraser head.

Cells are frozen and stored at minus 196 degrees Celsius. They are viable for at least 15 years, with no known expiration date.

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PUBLIC DONATION

There are few options for parents wishing to donate a child’s umbilical cord blood in Arizona, which has no public bank.

But for those who wish to donate the cells, with the hope of anonymously helping someone in need of a transplant, Cryobanks International accepts donations from mothers delivering at Northwest Medical Center, St. Joseph’s Hospital, Tucson Medical Center and University Medical Center.

The Altamonte Springs, Fla., company does not charge for public banking, according to a company representative, but a physician may charge for the collection. Ask your doctor.

Women must enroll for the donation by the end of the 34th week of pregnancy. Once donated, cells cannot be retrieved for personal use. For more information, go to www.cryo-intl.com or call 800-869-8608.

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'Anybody with any experience with the Holocaust would know it would be impossible for a girl to be throwing apples for seven months without being caught.'

Holocaust survivor and author Sidney Finkel

in his Northwest Side home, with a poster of his book, "Sevek and the Holocaust: The Boy Who Refused to Die."

Oprah believed him. So did literary agents, book publishers and movie producers.

But Holocaust survivor Sidney Finkel of Tucson says he never bought the concentration camp love story told by Herman Rosenblat.

“I knew the story was a lie,” said Finkel, 77, who was in some of the same Nazi concentration camps as Rosenblat as a young Polish boy. The two were liberated to England together and have known each other since they were teens.

Finkel, who wrote his own memoir and speaks to 7,500 students and adults a year about his experiences, worries that Rosenblat’s made-up story damages the credibility of all survivors.

“It creates doubt in people’s minds,” said Finkel, a retired appliance salesman and the father of five and grandfather of nine. “Everyone’s memoir is in doubt now.”

On Saturday, Rosenblat, who lives in Florida, recanted the story of a girl who saved him from starvation during the Holocaust by tossing apples and bread over the concentration camp fence for nearly seven months. The story was to be the subject of a memoir and a major motion picture.

After liberation, Rosenblat and Roma Radzicky met in New York on a blind date and, during conversation, discovered Roma had been Herman’s angel, or so the story went. They have been married for more than 50 years.

But now Rosenblat, 79, admits the story was untrue, and Berkley Books has canceled its plan to publish Rosenblat’s memoir, “Angel at the Fence,” due out in February. As of now, the movie deal is still on.

“Anybody with any experience with the Holocaust would know it would be impossible for a girl to be throwing apples for seven months without being caught,” Finkel said.

He also said Roma years ago shared details with him about her whereabouts during the Holocaust that put her living 200 miles away from the concentration camp.

And Rosenblat’s brother, also a survivor, told Finkel before his death that he was angry at Herman for making the story up, Finkel said.

“He just loved the publicity,” Finkel said of Rosenblat. “He wanted to be able to tell a great story and he must have felt the true story wasn’t good enough, so he made it up. It’s very bad for the Jews and it’s hurting all the survivors.”

In 2005, Finkel published his memoir, “Sevek and the Holocaust: The Boy Who Refused to Die.”

Finkel, who changed his name from Sevek to Sidney, has spent the last 14 years telling his story to about 100,000 children and adults in Tucson and around the country, he said.

He and his wife of more than 40 years, Jean, live in Tucson eight months out of the year. They live the rest of the year in the Midwest.

Finkel, who was liberated from the German concentration camp Buchenwald on April 11, 1945, tells his story so the world will not forget the horrors of the Holocaust. But he worries about the impact Rosenblat’s fabrication, which is making international headlines, will have.

Finkel is a source in a recent New Republic magazine story that led to Rosenblat’s admission that the story was untrue.

Historical records prove Rosenblat was at Buchenwald and other camps, according to the Associated Press. But he admitted in a statement through his agent that he fabricated the story of the girl and the apples.

“I wanted to bring happiness to people,” Rosenblat is quoted as saying. “I brought hope to a lot of people. My motivation was to make good in this world.”

In the tale, which he entered in a short story contest in the 1990s, Rosenblat wrote about how his mother died in the Holocaust. She later came to him in a dream, telling the 11-year-old she would send him an angel.

The angel appeared in the form of a 9-year-old girl.

The couple reportedly never told anyone the story for nearly 50 years, until Rosenblat wrote about it.

The story captivated the world. The Rosenblats twice appeared on the “Oprah Winfrey Show,” with Winfrey calling it “the single greatest love story. . . we’ve ever told on the air.” It was made into a children’s book, was to be published as a memoir and filming was to begin in March.

But for years, rumors swirled among survivors and historians that Rosenblat made it all up. How could a girl toss apples over a concentration camp wall for seven months, undetected?

Finkel said the story trivializes the horrors of the Holocaust.

“The Holocaust is not a happy story,” said Finkel, whose parents, two sisters, nine uncles and aunts and dozens of cousins died in the Holocaust.

As many as 6 million Jews and others died between 1933 and 1945, according to Yad Vashem, an organization dedicated to preserving Holocaust history.

“It is our families bones, their deaths. I am very angry at him. He says he did it to make us happy, but it was a lie.”

Finkel said the story also provides ammunition to those who claim the Holocaust was a hoax.

The horrors of the Holocaust were so great, some survivors end up trying to “outdo” others in how terrible their experiences were, he said.

But Finkel is determined to keep the history of the Holocaust alive by sharing his experiences.

“This is the purpose of my life,” he said.