Hailey was born on the morning of New Years Eve 2003 after an easy and uneventful pregnancy and labor. The instant she entered the world she was whisked away so quickly, no chance to bond with Mom, no explanation other than some skin was missing and the doctors didn’t know why.
The next three weeks were an overwhelming barrage of learning about a devastating genetic disease called Epidermolysis Bullosa. Hailey genetically couldn’t make a crucial protein in her skin called collagen VII which make the fibers that attach the layers of skin together. These fibers are fewer than there should be and the ones that are there are extremely weak. Without these fibers any type of friction to the skin separates the skin creating open wounds and blisters. The blisters can grow to enormous size due to pressure from the fluid detaching surrounding skin and filling with more fluid.
Hailey’s mom learned how to care for Hailey which included changing bandages, draining blisters, feeding, bathing and do every task differently than any other newborn or child. Several hours each day were dedicated to wound care and taking care of her special needs.
EB is a painful, mutilating, deforming, cruel disease. It’s the worst disease no one has ever heard of. It’s extremely rare and the type Hailey has, recessive dystrophic, is an even more severe and rare type. Those that suffer with RDEB typically live to late teens to young adulthood and succumb to infection, cancer or organ failure.
Having a child born with a genetic disease like EB is overwhelming. However, as bandage changes, visits to several specialist doctors, surgeries, procedures and hospitalization do became routine, somehow the disease of EB became overshadowed by Hailey. Hailey became bigger than EB. Her personality, interests, intelligence, insight and talents shined. People that know Hailey see beyond the bandages and physical limitations to the person Hailey is. Hailey is an open, confident, talented and amazing girl. She suffers daily from a condition so horrific, painful and debilitating but she continues to endure.
There is no cure yet for EB. There are exciting developments in the world of genetic disorders and finding cures but it requires years of research and FDA approval. As we wait for a cure, the most important thing we can do for Hailey is support her needs, alleviate her suffering and expose her to as many experiences and opportunities as we can.