BENEFITING: EB Research Partnership
Hi, my name is Kelly Fields. I decided to make a fundraiser for John Hudson who is an 11 year-old boy with Epidermolysis Bullosa (EB). This is a painful skin disease that is genetic. First, let me give you a little background of who this amazing young boy is and how I just knew I had to do anything at all to help him. I am a nursing student who is intrigued at almost anything to do with the body or helping individuals. Every day I religiously take the time to watch a show called "The Doctors". They share significant stories of individuals dealing with diseases or problems they can't get under control. I am especially thankful for watching the show on this particular day because I got to meet John. Not only am I so touched by this story, but so are many others I'm sure who tuned in today to watch. During the course of this 30 minute show covering John I was so emotionally touched and had a hard time stopping the tears enough to continue on. John is missing the collagen VII in his body, which is a protein that holds the top two layers of skin together. So without this protein his layers of skin just rub back and forth on each other continuously causing severe shedding, blistering, itching, and irritation. Within a couple seconds into the show I wished I could do something more to help this bright boy. Right then I prayed for a cure to be discovered. Each day John has to take off bandages literally covering his entire body, bathe in vinegar or bleach to kill the bacteria that could potentially lead to death, then bandage up again, only to continue the process the next day. After gently pulling off each section of gauze, his parents have to then help him pop the blisters when necessary and drain them. Then cover them back up. It was so upsetting seeing him cry in the bath. The healing and caring for him takes such a commitment. Can you imagine? Although struggling daily with his painful skin condition he kept smiling and said he was grateful for all he had. The part that was the hardest was when he said he did not understand why he couldn't live a normal life like all of his friends. He said that he didn't understand why. He cant throw a football, catch a football, walk up the stairs due to blisters covering his feet, hold a pencil properly, he can't eat some days due to blisters in his throat, join his gym class in sports, along with many other things he cannot participate in. His fingers are permanently folded down basically fused to the palms of his hands which is called ''mitten deformity". The slightest hit to his fingers will cause a lesion in his skin between each finger. John is the cutest little thing ever. I wish I could hug him. He said that he likes the movie Dolphin Tales because when the dolphin loses his tail he can relate so much. I cannot express to you how sad I felt for John and his parents. I want to help him so bad. I have concerned myself with this beautiful boy. I know that my story nor my effort towards having a successful fundraiser may not bring in thousands of dollars but I can say I tried for John and any other person struggling with this disease. If I only had a million dollars to give towards his research I would, but I don't, so this is my effort at helping. After seeing John's story I could confirm that nursing is what I want to do with my life. I want to meet people like John, be their hope, and become a better person because of it. When asked how people could help, John's only wishes were for people to hear his story and share it by going to jgsf.org and donate towards a research and help find a cure. If you go to his page at jgsf.org there is a video of him and his story and I know that you all will be just as touched as I was. This video is completely different from what I saw on "The Doctors''. The doctors actually paid him a home visit and it was just as touching. Just please take the time to see what he goes through everyday, hear his message, and realize how lucky most of us really are. I know that not every body will help out but all I ask of you is to share this story at least and please donate anything if you can. Hopefully the word gets around and people are willing to help this boy and his parents get their faith back. Let's save John one person at a time!
This link directs you to "The Doctors" story on him. 3 videos to watch if you are interested. http://www.thedoctorstv.com/main/content/Butterfly_Skin