Please help! You can. Trust me this can be beat. Luke would be the first to say it. Skin disorders this rare are often left in the background with little funding. Every dollar directed to eradicate EB is a targeted blessing. Let's not let another child suffer.
In addiition to all of the current modern medical research being developed to end this skin disorder there is the question of day-to-day management. It is complex and difficult because as much as we would love to end this, the reality is people are suffering now and managing/reducing the suffering is not an easy task to say the least. Bandages need to be changed daily. Overall, costs go well into the thousands. If you know someone who suffers from EB your love is restricted in that any hug or touch too hard could result in serious damage to the skin. For those of us who have loved one with EB as a friend we don't understand or see the reality of EB as the family does. Often the mother and father face this battle themselves.
Someday a child will never have to face what Luke faced, Luke the angel oversees us all and imparts the wisdom of faith.
There are several organizations that are working diligently to end EB. Debra is the largest. Donating money to Debra goes a long way to helping support people who suffer from EB.
The organization that Luke was most familiar with and most dear to his heart is EBMRF. 99.9% of the donations go to fund promising research in finding a cure. Luke has been on their website for over 12 years!
EBMRF (Epidermolysis Bullosa Medical Research Foundation) is a charity that Luke was intiminantly familiar with. He was invited to attend events and is featured on their website home page! If there is any charity you can donate to this is the one Luke would want you to support. They are helping to find a cure. You can donate here. They also provide ways if you would like to get involved.
Donating money to Debra goes a long way to helping support people who suffer from EB. By sending money to Debra you are helping families to get the support they need to manage and care for this skin disorder.