PS 55 Supports John Hudson Dilgen & EB!
Organized by: Jessica Marie
Jessica Marie via Crowdrise
June 19, 2015
What do we want? A cure!
What do we need? Your support!
PS55's 5th Grade SETSS students learned about a fellow Staten Islander, John Hudson Dilgen, when reading about him receiving a service dog in the newspaper. We were touched to learn about John's daily struggles and felt the need to help. We realize how lucky we are to have been born healthy and think about how difficult it must be for John to not be able to do the things other kids get to do due to his health. Please read about John, learn about his disease, how it impacts his life and donate today!
Try to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns, these wounds never go away. For children, riding a bike, skating, or participating in sports is difficult because normal activities of children cause chronic sores. Wounds may cover up to 75 percent of the body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister and prevent sight for days. Children with EB are often referred to as Butterfly Children because their skin is as fragile as a butterfly's wings. (-ebkids.org)
John Hudson Dilgen suffers from a rare genetic skin disease called Recessive Dystrophic Epidermolysis Bullosa, or RDEB. It is one of the more severe forms of EB. EB is caused by a lack of anchoring fibrils, the velcro which holds the top layer of skin (epidermis) to the layer below (dermis). John Hudson’s skin is fragile and has wounds similar to second and third degree burns over most of his body, both internally and externally. Blisters also affect the eyes, mouth, esophagus and even his internal organs and he has difficulty eating and swallowing.
John Hudson is bandaged from head to toe daily, including soaking in either bleach or vinegar, followed by medications. He makes routine trips to Cincinnati Children's Hospital where his esophagus is often dilated due to closure from blisters and where his other medical care is coordinated. EB is a chronic, terminal disease. Most children with John Hudson’s severe form of EB eventually succumb to anemia, failure to thrive and infection. Children who live longer usually succumb to squamous cell carcinoma. EB is not contagious and there is currently no cure. Research in gene therapy and stem cells is proving to be promising, but is still dangerous and with uncertain outcomes.
Recently John got a service dog named Dash to help him with his daily tasks. Dash helps him pick up things across the room, turn handles on doors and supports him in many ways to help make his life a little easier. We are going to fund raise for the upcoming week to raise money to fund EB research (www.ebresearch.org) ! Currently there is no cure for EB. Rare diseases such as EB are difficult to fund, however 1 in 50,000 people have some form of EB. When you cure a rare disease, there will be applications to other diseases as well.
Please support this cause - any donation will help!
For more information on John, please watch the YouTube video titled,
"The Boy with the Butterfly Skin" https://www.youtube.com/watch?v=oM5Am04eIIE
For more information on this disease, please visit