The video above is just to give everyone an idea of the possible challenges that Elijah could face because of this rare disease.
As many of you know, our beautiful baby Eli was born with a very rare and serious skin condition called Epidermolysis Bullosa also known as EB.
EB is a devestating disorder that affects a child from birth. EB sufferers lack a critical protien that binds the layers of skin together. Even the slightest touch or friction can cause the skin to tear, blister, or shear off. The wounds are similar to third degree burns. Some wounds do not heal leaving the child susceptible to infections, skin cancer, disfigurement, and even early death. EB also affects the internal organs and mucas membranes which leads to a shortened life expectancy.
It goes without saying that EB poses many challenges including a massive amount of unexpected expenses, coupled with the unexpectancy that daycare cannot be an option due to the risk of germs and infections being passed along.
Mom and Dad are working hard to make ends meet but Eli's needs far exceed what any normal parent could prepare for. One example of these costs would include, one type of bandage wrap that they use to wrap his wounds is $180 per box. That box only includes 15 wraps, and Eli's wounds must be changed daily. Eli's wounds require the utmost care in order to avoid infections.
The closest EB Specialist is in Phoenix, AZ which requires time off of work and travel. There is currently no cure for EB. As one of Eli's feet appear not to be growing and one of his toes has already begun to web, the future challenges EB will present in his life are unpredictable but what we do know is that Eli's wound care will continue for the duration of his life.
Eli coming into our lives has been a tremendous blessing. He shows us every day the definition of strength.
We are reaching out to all of Eli's friends, family, and supporters for donations in an effort to help Mom and Dad provide for Eli's needs and maintain stability in their lives. We appreciate any and every amount that can be spared.
Thank you for taking the time to read Eli's story.