Her arms and legs wrapped in bandages, the child smiled down at the personalized jewelry dangling from her neck.

Six cubes the size of dice spelled out her first name.

Hannah York has lots of pretty necklaces — more than a half-dozen long strands of glass beads in assorted shapes and colors. The 6-year-old Granbury girl sat on the carpet at her grandmother’s home in Fort Worth happily playing with them. Her scarred hands fingered one bead, then another, like a rosary.

One white bead symbolizes one day of chemotherapy.

Each silver-and-black bead — so many of those — represents a needle stick. A brown one is for hair loss, an aqua bead the reward for a feeding-tube insertion.

Hannah earned them all, more than 500 beads of courage.

"The pink one," her father said, "is her favorite."

Shaped like a butterfly, the handmade keepsake symbolizes Hannah’s bone marrow transplant.

In April, patient No. 5 lay in a hospital bed at the University of Minnesota with her coloring book and received bone marrow cells harvested from 8-year-old brother Mason.

That priceless gift appears to be working wonders in the tiny body of a child who has suffered every day of her life from a rare, painful skin disease — recessive dystrophic epidermolysis bullosa, or EB — that affects 1 in 100,000 children.

Jason and Heather York first heard the medical term from a pediatric dermatologist hours after their newborn daughter was rushed from Texas Health Harris Methodist Hospital Fort Worth to Cook Children’s Medical Center. Hannah was missing 60 percent of the skin on her lower left leg. When a nurse suctioned Hannah’s mouth, the tissue inside her cheeks tore and began bleeding.

Those born with EB lack a protein (collagen type VII that anchors the body’s two skin layers like Velcro.

Any friction — even the slightest touch — can cause tearing, blisters and painful sores, externally and internally. Wounds are similar to third-degree burns. Young patients are called "butterfly children" because their skin is said to be as fragile as a butterfly’s wings.

"People ask us all the time, 'How do you deal with this?’ " Heather York said.

Hannah’s mother thought of the demands, sacrifices and financial hardship of the past six years. Trips to doctors’ offices. Hospital stays. Surgeries. Medications.

She thought of Mason’s needs and those frightening bedside hours spent worrying over and praying for their sick daughter.

"Our answer is very simple," the mother said. "If it’s your child, you do whatever you need to do."

'A little football player’

Since Hannah’s infancy, bandaging has been a ritual, a painstaking daily routine.

When the child started to crawl, her parents covered the "hot spots"— her heels and elbows — padding her, as Jason remembered, "like a little football player."

Scar tissue began forming in Hannah’s esophagus, the result of acid reflux and eating solid food. By age 3, the tube leading to her stomach had narrowed to the diameter of a drinking straw. She had surgery in Cincinnati to enlarge the passageway. Almost three years later the procedure was repeated.

On June 7, 2008, Heather’s stepmother, Elsa Butler, opened the Star-Telegram. Her eyes fell on a story with the headline, "Stem cell treatment cures genetic disease."

The article described how researchers in Minnesota, using stem cells from umbilical cord blood and bone marrow, had apparently cured a 2-year-old New Jersey boy with EB. Nate Liao received the cells from a brother, a genetic match.

"Nate’s quality of life is forever changed," the story quoted Dr. John Wagner of the University of Minnesota Medical School, who performed the treatment, as saying. "Maybe we can take one more disorder off the incurable list."

Butler kept the story and left it for the Yorks.

Heather read it first.

"Jason, you’ve got to read this — now!" she cried as her husband carried an armload of groceries into the kitchen. Jason read the story. Reread it. The couple looked at each other, remembering that awful moment the pediatric specialist told them what kind of life they could expect for their child.

Hannah, the doctor said, might not live beyond early adolescence.

"As a mom, I felt if I didn’t plan for the end that when it arrived, I wouldn’t be able to handle it," Heather said. "So we had been planning the funeral for a long time. When we saw the story I told Jason: 'Oh my gosh! We’ve got to start saving for college and the wedding!’ All those things we never expected to see."

A brother’s love

The Yorks telephoned the Minnesota hospital and spoke with a nurse coordinating the clinical research program. They were told that for Hannah to be considered for the experimental therapy, she would need an identical sibling match.

The couple had never talked to their son, a sensitive child, about what the future seemed to hold for the sister he loves dearly.

At the doctor’s office, Jason York, an educational consultant who works with troubled kids, knelt next to the blond boy.

"Mason," he said, "this could save Hannah’s life."

The child suddenly understood.

"You mean, without this she could die?" he asked.

The odds weighed heavily against Mason having the same genetic markers, but a test confirmed that he was a match. The Yorks were equally amazed — "floored" in their words — when Jason’s insurance company agreed to cover part of the treatment. The transplant alone cost $500,000.

On April 1, Hannah checked into the University of Minnesota Children’s Hospital Fairview, where she underwent eight days of chemotherapy designed to wipe out her immune system. The little girl battled nausea. Her hair fell out. On the morning of the 10th she awakened, ready to receive a gift that only her brother could give.

A long needle was used to withdraw bone marrow stem cells from Mason’s lower back.

"I was asleep, so I didn’t even feel it," Mason said, smiling.

The stem cells were introduced into Hannah’s body intravenously a few hours later.

The next day, still sore, Mason gamely hobbled around the lawn at the Ronald McDonald House, bending over as best he could to gather Easter eggs for himself and his little sister.

Meanwhile, Hannah’s ordeal was just beginning. She needed a morphine drip to ease the pain of mouth sores caused by chemo. She suffered kidney failure and had liver issues. She shook with chills. Her temperature spiked to 104.6.

One day her father leaned down and asked how his daughter felt.

Hannah looked up from her pillow.

"I feel pretty good," she whispered, "for feeling so bad."

For each 24 hours in isolation, for each day of fever, for every medical procedure she underwent, the child earned a bead as part of the hospital’s Beads of Courage program.

Hannah spent 46 days in isolation. When she confessed one day that she didn’t want to leave her hospital room because of her baldness, Jason shaved his head.

At the end of every day, Jason York faithfully wrote down his thoughts, and posted them on a Web site, www.acureforhannah.com.

The entries to family and friends always contained a positive message.

"She is not in pain, and for now that is enough for me." "This experience has been life altering . . . in so many ways." "We continue to pray for her body to change and heal." "Thank you for your prayers."

Beating the odds

The Yorks fully understood the risks involved with the transplant. Of the four children selected before Hannah to participate in the clinical trial, one died the day of the procedure, another afterward. On Hannah’s most difficult days Jason wondered, "Did we make the right decision?"

Today they know they did. Since Hannah returned home in late June, the Yorks have watched with wonder at the steady and significant changes in their daughter’s condition. Hannah is no longer anemic, a chronic condition among EB patients. She is more energetic. She has fewer skin tears and blisters. Her new wounds are less severe and heal quickly.

Remarkably, Hannah is now generating fibrils, the roots that anchor her delicate skin.

"Mason’s cells are taking over her body," Jason said.

The Yorks have no idea how long their daughter will continue to improve, and the lead researcher for the clinical trial isn’t prepared to declare that a cure has been found.

"The proof requires time," said Wagner, director of the blood and bone marrow transplant program at the University of Minnesota. "Based on what we have learned from these kids so far, it takes months to years to see the full extent of the correction.

"Nonetheless, we are thrilled by the successes. Hannah’s progress has been spectacular."

During a recent visit to Fort Worth, Hannah went swimming and played with her necklaces with Mason, who earned his own beads in the hospital — 57 of them.

"Hannah, what’s your favorite food?" her father asked in a coaxing tone.

After a long silence a shy smile lit her face.

"Be-na-nas" the tiny voice replied.

Hannah pulled on a knit cap, covering her peach-fuzz hair, and curled up — all 34 pounds — in her daddy’s lap.

"And cheese pizza and tacos and nachos. And Dr Pepper."

Based on what we have learned . . . it takes months to years to see the full extent of the correction. Nonetheless, we are thrilled by the successes. Hannah’s progress has been spectacular."

DAVID CASSTEVENS, 817-390-7436

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