Condition: Epidermolysis Bullosa
City, State: Indianapolis, IN
Club: Winding Ridge Elementary School Sparrow Club Service Hours:
Date Adopted: 11/20/2015
Lilah was born on April 17th in the early morning hours. She was a C-section and came 3 weeks ahead of schedule. Upon her birth the Dr. noticed she did not have any skin on her hands or feet. She was rushed away to the hospitals NICU and a call was placed to Riley Children's Hospital. I was unable to see Lilah until she was leaving by ambulance with a team of EMT's to head to Riley.
I spent less than 24 hours recovering from my C-section before I rushed down to Riley to be with her. It was there that we were given the diagnosis of Epidermolysis Bullosa. Epidermolysis Bullosa is an extremely rare genetic skin condition in which the skin is not anchored to the body . Because of this, the slightest touch, or friction causes the skin to blister and come off. This also affects the mucus membranes such as the mouth and esophagus. We later found out that of the 4 types of EB, Lilah was diagnosed with the Recessive Dystrophic form. It affects roughly 1 in one million births. This form is much more aggressive and has a max life expectancy (without complications) of 30 years. Many children with RDEB lose function of their fingers due to constant blistering and webbing that occurs. Crawling and walking sometimes never happen and mobility becomes an issue. Lilah requires constant attention and catching the blisters when they start is essential to lessen the skin loss. A needle is used to lance every blister to prevent it from growing. Bandage changes take about 2 hours to complete daily, and we go through over $600 dollars a day in bandaging products. Lilah is likely to need a G-tube in the near future, as most of the nutrition she intakes is used to heal wounds and very little is left to assist in growth. This condition is lifelong and can only get worse before it gets better. There is NO CURE for this disease, but there is research being done. Awareness and fundraising will greatly help make finding a cure or treatment possible.
Lilah is now at home with her five year old brother and I. She has good days and bad days, but I tend to focus more on small daily victories. She is the strongest person I know and isn't even 4 months old. She is my hero in more ways than one, and has taught me more in these short months than anyone has in all of my 28 years.
Epidermolysis Bullosa is known as "The worst disease you've never heard of", this couldn't be more true. Thank you for developing such a wonderful organization with such an incredible message.