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Keric Boyd’s story | Epidermolysis Bullosa

100 Days Post Transplant
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    Rare Genetic Skin Disorder

    Patient: Keric Boyd, 6 years old
    Parents: Krista and Kevin Boyd
    Siblings: Kendall and Kacey Boyd
    Hometown: Nixa, Missouri
    Primary Physician: Jakub Tolar, M.D., Ph.D.

    "Keric was born with a rare genetic skin disorder where his DNA is missing anchoring fibers that layer the skin together. Any little pressure to his skin will cause large painful blisters to form. The sores are treated like second degree burns and need daily maintenance."

    Story by Krista Boyd
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    A Cure

    Keric would become the world's fourth recipient of BMT for his fatal genetic skin disorder. University of Minnesota researchers were able to correct EB in mice using bone marrow. This was the first time physicians had approached EB from a systemic perspective, using transplant to replace the defective blood system.

    "I had an alert on my computer so anything with EB would pop up. In October 2007, I saw that they were undergoing a bone marrow transplant for the first time as a trial. In June 2008, the University of Minnesota made an announcement that they may have cured EB.”

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    Working with a Renowned Program

    Before his transplant, Keric, had to be wrapped from head-to-toe in skin dressings. Dr. Wagner is an internationally recognized expert in the field of stem cell transplantation.

    “Immediately I got online and e-mailed Dr. Wagner, thinking I would not hear back from him for weeks. Within two hours he e-mailed me back. I was really impressed. Within two days I knew exactly what we needed to do."

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    Appealing Insurance Denial

    Tim, the BMT coordinator told Krista, 'we will take care of it.' and within two days the decision was overturned.

    "We figured our insurance company would deny it because it was a new treatment. Sure enough, they did. Whatever the University of Minnesota sent, convinced them that this was the appropriate treatment."

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    A Family's Effort

    Kacey, in burgundy, helped Keric recover. Krista was Keric's primary caregiver during transplant and his dad, Kevin, would visit as often as possible.

    “Kendall, my oldest daughter, was the donor. "Kendall was excited about being the donor, because she wanted to help Keric, but she was a little nervous. I was a little nervous because technically, Keric would be the fourth child to go through a transplant for EB.”

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    Team of Experts

    In addition to Dr. Wagner, Keric was cared for by a team of health professionals trained specifically to serve patients undergoing BMT.

    “I felt like they explained things well. Dr. Tolar spent three hours with us on that first visit. We had a very sound base to make our decision. Dr. Tolar said, 'The only thing I can promise you is that he will get the best possible care here.'”

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    Complications with Treatment

    Krista's husband traveled back and forth from Minnesota and home. Krista stayed at the Ronald McDonald House and appreciated a hot meal every night.

    "From about 11 days to two weeks after the admission date, Keric developed complications. That part was very stressful because one minute your child is being silly and the next minute he is kind of in a comatose state and you just see him deteriorate right in front of your eyes."

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    Leaving the Hospital

    Keric's 100 day check-up is an important milestone on his road to recovery.

    “Going home, you felt like you were leaving a part of your family. Housekeeping came by and said 'good luck, we will miss you' and gave us a hug. The nurse technicians came by to see us off. It was joyful, but it was also sad because you were leaving your friends."

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    The Possibilities

    This trial is the first time physicians have approached EB from a systemic perspective, using transplant to replace the defective blood system. Dr. Tolar and Dr. Wagner think this therapy may offer new possibilities for treating skin conditions other than EB.

    “They are learning other things too like being able to help regenerate new skin for burn victims in the future. There is so much more potential in treating skin conditions."

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    A New Beginning

    Keric's skin is noticibly improving after transplant.

    "Before, we always hoped for the best, but we knew the things to come. In years past, he would go swimming but every piece of him was covered with dressings – we had to keep him pretty sheltered. Now, we are thinking of all the possibilities. He will be able to be a normal kid and play sports. He can roughhouse and we don't have to say 'be careful, be careful, be careful.' It is just truly amazing."

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