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Saturday
Jan022010

In the News: Hempfield Girl Growing Stronger

Pittsburgh Tribune Review

Friday, January 1, 2010

Mary Pickels

Hempfield girl growing stronger since stem cell transplant

Seven-year-old Fallyn McNamara opened a Christmas card and squealed with delight.

Included among the many "Xs and Os" — and hugs, father Frank McNamara reminded her — was a check. Moving at a quick pace, she headed to the family's row of stockings and tucked the check inside her own.

"Her energy levels are up," McNamara said, smiling at his own understatement.

Six months ago, Fallyn, her father and sister Jennifer, 12, left their Hempfield home for the University of Minnesota Children's Hospital, where on June 22 Fallyn underwent an allogeneic stem cell transplant. Her sister served as her donor.

Fallyn was born with recessive dystrophic epidermolysis bullosa, or EB. The genetic skin disorder renders skin so fragile that the slightest rubbing or scratching can cause blistering. Play activity and even the pressure of a T-shirt's tag can cause wounds that take weeks to heal.

The National Institutes of Health estimates that about 12,000 Americans have some form of EB. Until recently, the only treatments available were preventive and supportive. McNamara learned about the clinical trial through the online EB community.

Fallyn and her father returned home in October. He said the process was scary at times for the whole family, which includes his wife, Cheryl, and a third daughter, Stephanie, 9.

"I wouldn't hesitate to do it all over again," McNamara said. "It's a dramatic quality of life change."

On a recent afternoon, Fallyn pointed out her favorite strands on the "Beads of Courage" she and Jennifer were given after the transplant. The hospital awards patients brightly colored glass beads as they complete numerous medical procedures. Fallyn's strings of beads grew so long that her father hung them from her hospital room ceiling.

Healing regimen

Fallyn continues to wear bandages on her arms, hands, legs and feet. But she's less prone to blisters now, and her healing time is reduced, McNamara said. She is off anti-rejection drugs and will begin tapering off other transplant-related medications.

Fallyn's diet is mostly liquids, and she gets most of her calories through a gastronomy tube. But as her mouth blisters heal and therapy has enabled her to open her mouth wider, she's able to eat pureed foods such as mashed potatoes and applesauce.

"EB kids are iron-deficient and extremely anemic," McNamara said.

Post-surgery, Fallyn's anemia has been relieved, and her four- to six-hour daily naps are history.

Her body could have rejected her sister's cells. But there have been no signs of that, McNamara said.

Her legs are stronger, and "more fleshed out," he said. She uses a wheelchair less and less.

Hope, not hype

University of Minnesota researchers and physicians Jakub Tolar, Bruce Blazar and John Wagner are part of the clinical trial team. Researchers discovered that certain stem cells found in bone marrow could correct the biochemical defect in EB in a mouse model of the disease, a hospital release stated. Through the infusion of cells from a healthy donor, the stem cells produce collagen type VII and correct the underlying genetic defect.

The team has performed half a dozen transplants in the past three years.

Expectations were that transplantation would "partially correct" the disease, Tolar said. He declined to comment on specific patients, citing privacy concerns.

In general, he said, the results have been "unprecedented in a good way."

The children develop fewer blisters and skin erosions, and the missing protein appears in their skin and mouths. The healthy, transplanted cells travel to the skin continuously and heal it.

As lesions heal and the skin is less irritated, skin cancer, a high risk for EB children, may not develop, Tolar said.

"We haven't followed these children for decades, obviously," he said. "We are extremely careful not to put any hype into this. We don't give unfounded hope."

Fallyn will return to the Minnesota hospital for a six-month check-up this month. To protect her immune system, she is homebound this year and has tutors. She hopes to return to school next fall to begin third grade.

McNamara said Fallyn will soon resume physical and occupational therapy. More surgeries are in her future, some to separate her "mittening" fingers.

The family's health insurer authorized Fallyn's in-patient transplant care. McNamara estimated follow-up care costs could exceed $200,000, most of it not covered by insurance.

Family and friends have arranged fundraisers, which can be found on the Web site's calendar at helpfallyn.org. Donations to a trust set up for Fallyn's ongoing care may be sent to: Fallyn R. McNamara Special Needs Trust, John P. McNamara, Trustee, c/o First Commonwealth Bank, 750 E. Pittsburgh St., Greensburg, PA, 15601.

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