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.
When viewing family photographs, memories of the life before Charlie's BMT come flooding back. Then they are suddenly reminded of how Epidermolysis Bullosa (EB) had taken over their lives.
At just 2-weeks-old, Charlie was diagnosed with EB, a group of genetic skin conditions 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.
Originally from Appleton Wisconsin Charlie's parents, Kevin and Trisha first learned of EB when they became Charlie's foster parents at first. However, they were aware of his condition before they met him. 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 even living this way.
For years Charlie and his entire family suffered from mental anguish while witnessing Charlie deal with EB. 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.
Another very difficult issue was the lack of knowledge about EB from the general public, family and friends, school system, and the Health Care Profession. Charlie's parents often needed support and there seems to be a shortage of caregivers, which only added to the stress. The misunderstanding public and support systems that were meant to help Charlie and his family, were not available.
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, "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 the success that was taking place at the University of Minnesota. After speaking with other hospitals and Bone Marrow Transplant doctors it was obvious that Minnesota was where Charlie needed to be.
The family came to Minnesota to seek better treatment. The nurses and doctors at the University of Minnesota were more experienced in dealing with EB patients and their families than any other facility that Charlie and his family had experienced before. Trisha and Kevin also felt that their opinion and expertise being the parents of an EB child were listened to and taken seriously. They knew they were an important part of the team that was needed for Charlie.
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 did not know if the BMT would work, but they knew that if they did nothing Charlie's disease would have progressed rapidly. His life was already extremely torturous and they needed to make his life one that is worth living.
Even after the BMT Charlie 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. Charlie is now finding comfort in his new skin.
For the first time, Charlie is able to sleep on a pillow at night without his head wrapped. "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 University of Minnesota there will be many more firsts to be had For Charlie and his family in future years to come.