Feeling completely lost, sad, and angry were basic emotions that Reid and Joy can remember experiencing when their son, Payton, was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB), the most severe and aggressive form of Epidermolysis Bullosa (EB).
Payton was born on May 10, 2005. It was evident that Payton had complications when his skin stopped just above the ankle, exposing muscle and bone on his left foot. He stayed in ICU for nearly four weeks. Joy, unable to hold her newborn son, would sit by Payton's bedside each night promising that she would do everything in her power to help him. During those agonizing first few weeks of Payton's life, Reid and Joy can remember being in total shock and unaware of what the future would hold for Payton. "We were told by doctors that there was no cure and life expectancy was very short," expressed Joy.
Children with EB lack a protein called Collagen VII, which are the anchoring fibers that hold the skin layers together. Typically, the recessive forms are more severe. Onset is at birth with areas of missing skin, nearly all skin surfaces and mucous membranes. RDEB appears to be more at risk for developing a severe form of cancer, squamous cell carcinoma. These localized skin cell tumors have the ability to grow faster and spread to other areas of the body more rapidly than they would in a less compromised individual.
During the first five years of Payton's life, his skin was as fragile as butterfly wings. Large, painful blisters were caused by the slightest irritation from a hug or the rubbing of a T-shirt. To help prevent blisters and heal skin, Payton's entire body needed to be covered in gauze bandages. His fingers and toes were separated to prevent them from fusing together.
The most painful hardships For Reid and Joy to accept was knowing that Payton has EB and yet there is nothing they could do about it. Also, realizing the pain that Payton would have to endure throughout his life, and the devastation that this disease will have was awful to take in. "I have accepted the fact that my son has a skin disorder, but by no means do I accept EB," said Joy.
In 2007, Payton's family was given a ray of hope when they were told of a Bone Marrow Transplant (BMT) that was being performed at the University of Minnesota Amplatz Children's Hospital. A team of Hematology Oncology doctors led by Dr. John Wagner and Dr. Jakub Tolar were the first to demonstrate that stem cells found in bone marrow can repair skin. They have found the stem cells have been shown to anchor to the skin and replace the missing protein collagen 7 that anchors the skin to the body.
The reason Joy brought Payton to the University of Minnesota Amplatz Children's Hospital was based on the team of doctors and the entire staff. "They were willing to help Payton and answered every question I had with the utmost integrity of anyone I have ever come across. I was finally meeting with a medical team to which would give us hope not disappointment," says Joy.
Reid and Joy decided to travel to Minneapolis in the hopes of giving Payton a better quality of life. They knew it wouldn't be an easy process, but the research and previous transplants that have been done on other patients with EB were promising. Reid and Joy decided a BMT would be the only option for Payton to have a chance at having a quality of life.
Payton's younger brother, Paxton was a Bone Marrow match. Before undergoing the transplant, Payton had chemotherapy treatment that wiped out his immune system. After responding well to chemo he was able to undergo the bone marrow/stem cell transplant.
After the BMT, Payton was unable to leave his hospital room for fear of infection however doctors were happy with his recovery. Joy expressed, "My thoughts about U of M are beyond what I can describe. I finally felt at ease knowing my son was in good hands with a group of doctors who wanted to help him as much as I did. Outstanding group of professionals!"
This transplant has changed Payton's and his family's lives drastically. Before the BMT, bath and bandage changes lasted six to eight hours. Now after the BMT bath and bandage dressings only last two hours.
Before the transplant the thought of water would send Payton into such rage and he would be so upset with the mere thought of it. Now Payton is swimming and loving every minute of it. This past summer, Reid and Joy were able to take their three boys to the beach and play in a water park for the first time. Something they would never have thought Payton would be able to experience.
Letting go of the fear that Reid and Joy carried every day simply because Payton is no longer afraid is refreshing and a great experience for their family. Payton's family is now able to do normal family activities without having to plan their lives around bath and bandage changes. So many paths have been put into place for this Alabama family as they continue with this journey. They have been faced with many decisions that have been extremely hard, but through their circle of supporters, faith, and endless determination they have surpassed what they had originally imagined.
At age six, Payton now has a spunky and determined new attitude that he never had before. He is finally willing and able to try different things, which is very exciting. He is attending Kindergarten this year and is enjoying it. Payton is all about interacting with everyone and enjoying his life. RDEB no longer consumes his life; it is now consumed with happiness, joy, and love.