EB is overwhelming emotionally and financially:
Eli's parents, Jessica Spicer (20) and Randall Burkhart (21), were completely caught off guard with Eli's EB. Jessica was just preparing to go off to college when she found out she was pregnant. Now with Eli's condition that will have be put on hold. Eli will require around the clock care. Daily wound care can take hours just for dressing changes. The costs of supplies are both substantial and unpredictable.
Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. The risk of infection is so great that most severe cases have to completely bandage from neck to toe. The worst forms of EB lead to eventual disfigurement, disability and often early death.
As the USA does not have anything in place for these patients, most are forced to go without vital medical supplies as well as parents working crazy shifts JUST to cover the extortionate bills each month as their insurance only covers part of the bill. All of this is on top of regular living expenses.
The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen lasting up to 4 hours in more severe patients. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.
Georgia, Eli's home, is the worst state as far as the help they provide for medical supplies. We have to do all we can to change this, medical care should be a human right in this day and age, especially for young babies with EB.
Genetic testing and dependable transportation:
There will be many miles traveled from Eli's Carrollton home to Atlanta and Lithia Springs where Eli's doctors are. Gas costs are high, car maintenance is expensive and there may even be times Randall will not get to work because of things required for Eli's care. He has already missed more than a month since Eli's birth.
Every cent raised for Eli and his family will be needed for all this and so much more that I'm sure we aren't aware of yet.
Genetic testing will need to be done on Eli to find out what sub-type EB Simplex Eli has. Finding out his sub-type is important to know because it will help doctors and his family know more about how to treat his EB. This is a huge expense that is not covered by any insurance.
Your contribution matters!
Every donation makes a difference. There is no amount too small and every cent will go towards Eli's care.
Your voice matters!
Every dollar helps but so does your voice. If you can't donate you can use the share tools here on Indiegogo to get Eli's story out. Eli has a page on facebook as well called Prayers for baby Eli. Prayer is the single most powerful thing one can do and it changes things. Share Eli's story and help promote EB Awareness. Thank-you so much!