Hear Charlie's story,
as featured on KS95 For Kids.
Background
At just 2-weeks-old, Charlie was diagnosed with Epidermolysis Bullosa (EB), a genetic skin condition characterized by fragile skin and easy blistering. This rare genetic disease causes painful open sores on soft tissues inside and outside the body. The skin is so fragile in people with EB that minor rubbing may cause blistering. In some forms, the blisters heal with scarring which can result in permanent change to the skin, for example fingers may fuse and hands contract, reducing movement. Children with EB often have a shorter life span, death most often resulting from infection or severe form of skin cancer that develops over time.
Charlie's Story
When Charlie and his family look back over the last five years, their journey seems as if it were a dream. Almost as if it never really happened, because when reminded of what life was like before 5-year-old Charlie received his experimental Bone Marrow Transplant (BMT) at the University of Minnesota Amplatz Children's Hospital, life was simply unimaginable.
From Appleton, Wisconsin Charlie's parents, Kevin and Trisha, they first learned of EB when they became Charlie's foster parents. Abandoned at birth, Charlie came home with the Knuths from a hospital in Milwaukee when he was 2 weeks old. His adoption was finalized a year later. Prior to meeting Charlie they no knowledge of this dreadful disease, and can remember being amazed that it even existed simply because they couldn't imagine a person living this way.
For years Charlie and his entire family suffered from mental anguish while Charlie dealt with constant, unimaginable pain. Along with the many hardships, the most difficult to witness was anticipating painful everyday tasks such as bathing and changing clothes. Dressing changes took at least an hour, and most of the time, were done multiple times during the day. Baths with dressing changes took up to five hours every other day.
Having to watch any child suffer pain on a daily basis is a nightmare for any parent. Especially, in order to care for their child, the parents have to inflict pain. Trisha says, "The pain is something that doesn't last for seconds or minutes, but hours." Witnessing Charlie suffer through torturous pain and being unable to help was paralyzing for his family.
Finally, a ray of hope came to Charlie and his family, when they heard about a successful clinical trial that was taking place at the University of Minnesota. It was obvious that Minnesota was where Charlie needed to be.
Trisha said, "I was impressed with the nurses and doctors ability to tweak and discover ways around difficult situations. It seemed that Dr. Wagner and Dr. Tolar were willing to do anything it took to try and make this work. They also understood that we were the experts when it came to dressings and wound care. I have never seen this at any other hospital Charlie has been to."
Kevin and Trisha were given complete overview of the bone marrow transplant process - the big risks, but also the big potential rewards. They also knew that if they did nothing, Charlie's disease would progress rapidly and his life would be cut much too short.
Charlie went through the bone marrow transplant, and while he still gets blisters, they are much less severe. Charlie's life is no longer defined by his dressing changes and his disease. For the first time in his life he is able to live without bandages covering his head. For the first time, Charlie is able to sleep on a pillow at night without his head wrapped. Shortly after his transplant, Charlie got to wear shoes for the first time. These milestones are "Even though the experience was extremely stressful, exhausting, painful, and difficult, we are so blessed that Charlie had this opportunity. I am no longer worried that even rubbing his forehead on the furniture will shear his forehead right off," said Trisha.
For the first time, Charlie is assisting with his bandage changes and his baths. He now plays in the bathtub instead of screaming and fighting. He helps wash his skin and has taken an active role in his care. He is more independent and has an improved self-esteem.
"Now we have time to spend with our other three children for the first time. The life of our family does not revolve around dressing changes anymore. We can actually schedule activities or just do nothing at all," says Trisha. Thanks to the research supported by Children's Cancer Research Fund there will be many more firsts to be had For Charlie and his family in future years to come.
