EPIDERMOLYSIS BULLOSAWe are the parents of Borna, born August 11, 1998; Arianna, born March 1, 2005; and our little girl, Lana, born May 26, 2008.
Lana was born with open wounds on her feet. During our daily conversations with the doctors at the local hospital in Orlando, we couldn't reach any clear conclusion about whether our little Lana was actually sick or not. They treated her with various antibiotics and dressed her open wounds every single day, even though they didn't have a diagnosis yet, because they told us our little Lana was the first case their hospital had ever seen where a baby was born with such open wounds. On June 13, 2008, our little Lana was discharged from the hospital, and at that time, her discharge papers noted a suspicion of epidermolysis bullosa. We had never even heard of such a condition, so we decided to consult our pediatrician, who advised us to take Lana to specialists in Boston for further testing. My wife and I made the decision to head to Boston with Lana, and we requested a referral from our pediatrician to the pediatric dermatology department at Massachusetts General Hospital. On July 7, 2008, we arrived at Massachusetts General Hospital, where the examinations began and where our little Lana was kept for inpatient treatment until July 16, 2008. On July 14, 2008, a biopsy was performed on Lana's left hip, and the sample was sent to a specialized lab in Germany, since there wasn't a facility here in the States capable of processing it. The physician overseeing Lana’s care at Massachusetts General Hospital told us that our little Lana suffers from hereditary epidermolysis bullosa, and once the biopsy results come back from Germany, we will finally know which of the 27 subtypes she has.
Hereditary Epidermolysis Bullosa—such a heavy name for such a tiny baby...
EPIDERMOLYSIS BULLOSA is an incredibly difficult, incurable disease that, beyond skin issues, brings along a series of complications affecting other organs like the eyes, digestive system, and musculoskeletal system. It manifests through extensive changes, specifically widespread wounds all over the body and internally, creating immense pain and making life extremely difficult for the patient. Most those affected become 80-100% disabled within just a few years of life.
Living with epidermolysis means having skin as fragile and vulnerable as a butterfly's wing. Even a simple touch can result in a new blister or new damage. Everyday life means constant new wounds, endless dressing changes, staring looks from others, intense pain, surgical procedures, and a total reliance on the help, care, and presence of others.
Our little Lana is a member of the DEBRA Foundation—an organization for those living with epidermolysis bullosa—who have offered us support through information and basic supplies.
Since our income isn't enough to cover everything, assistance is vital given the nature of this rare disease, which requires a multidisciplinary medical approach and is an extreme financial burden. In fact, the costs for daily care alone amount to roughly $1000 every month. Financially, things are very difficult. We always need to have funds set aside in case an emergency arises. Life with epidermolysis bullosa is a constant struggle, and we never truly know what tomorrow will bring...
OUR GREATEST WISH IS FOR OUR LANA TO RECOVER
At the end of this letter, we would like to humbly ask if you might consider including us in your corporate social responsibility plans, helping us in any way you can, and if necessary, we can provide Lana's medical documentation via mail.
If you are willing to provide financial assistance, donations can be made to account number:
4115008-1011111116, with the reference number: 4054000154, held at Chase Bank.
