It isn’t uncommon for young boys to spend a long time in the bath, but in the case of John Hudson (JH to his family and friends) the reasoning is not because of wanting to play with toy boats or make bubble beards. JH’s bathing sessions take about two hours at a time out of necessity. Since birth, JH has suffered from epidermolysys bullosa (EB). This rare skin condition, caused by lack of the protein collagen-VII, causes the skin to be incredibly fragile resulting in tears and blisters.
These painful skin abrasions make mobility incredibly difficult and painful for JH. He is bandaged from head to toe in order to keep the open wounds free from bacteria. The regular bathing sessions (administered by nurses) consist of soaking in bleach mixtures to prevent infection, draining of blisters, and continuous redressing of bandages.
Because of his mobility issues, JH has recently received a service dog (Dash) to assist with certain activities. However, as conditions have worsened, JH has missed a great deal of schooling and parents Faye and John have had to take off much time from their work schedules.
Recently, JH has begun a gene therapy trial at Stanford University (a cross country journey for the New York family). This process could hopefully spell a great change in JH’s condition to relieve much of the pain he deals with on a regular basis. Currently, there is no cure for EB.
Until then, the biggest need for the family is a renovated bathroom. This will be a much larger facility with space for all of his nursing supplies and a specialized tub. Most importantly, the room will be on the first floor of the house making it easier for JH to get to the room.
JH remains an optimistic teen. He loves hockey and hopes to chronicle his upcoming therapy sessions in a Vlog he is creating. We’re pretty sure he will have LOTS of followers!
Your donation can help us share a bit of happiness, hope, and comfort in the lives of John Hudson and families like his. Please consider a donation to Five Fathers Children’s Charity.