We are one of those families. In April 2006, our daughter was born without any skin on her left shin and foot as well as on part of her chest. Luckily, we were at Northside Hospital in Atlanta, where the doctor on call had actually seen this very rare condition and immediately placed her in the Intensive Care Nursery to be cared for. When our doctor uttered five words: "Your daughter has Epidermolysis Bullosa", our world changed forever.

She continues to need to be bandaged daily in order for her skin to heal and to prevent new blistering. Although Epidermolysis Bullosa is an incurable disorder, with the proper care and attention, Ellie is a happy little girl doing well despite her EB.

What is Epidermolysis Bullosa?

According to the DebRA website, Epidermolysis Bullosa is definied as: "A rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. This condition is not contagious. An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally".

When Ellie was first diagnosed with EB, we were devastated, terrified and afraid. But there was no time for sorrow or self-pity because we had to jump in with both feet and learn the realities of a disease almost no one has ever heard of.

This is where DebRA entered our lives.

DebRA is the only national non-profit organization who supports EB research and provides programs and services to people with EB and their families.

As luck would have it, DebRA's bi-annual caregiver conference was held just 6 weeks after Ellie was born. It was DebRA that introduced us to our now invaluable EB support network... other families like ours, some with similar EB presentations as Ellie, but many with a much more severe form of this devastating condition. DebRA also paid to have a volunteer fly to Atlanta and share with us tips and tricks on everything from bandaging tiny fingers and dealing with infected blisters, to life after infancy and the emotions surrounding Ellie's quality of life.

Fortunately for us, Ellie rewards us every day with her amazing sense of humor and personality despite having to sit through daily bandaging to protect her fragile skin. Kids affected by EB are sometimes called "Butterfly Children" because their skin is as fragile as a butterfly's wing. Ellie's skin may be fragile, but her strength and incredible spirit make you sometimes forget the things she will face.

There are still many uphill battles ahead of us. Ellie will always have to be careful as she navigates typical childhood activities. The playground, finger-painting, hopscotch or even playing dress-up has the potential to cause blistering from head to toe. But because of the support we received from DebRA since day one, we are able see the many possibilities for Ellie's future.

We are asking you to help by supporting our fund raising efforts for DebRA with a donation. Our 5th Annual Night of Dinner & Dancing Under the Stars Benefit and Silent Auction will be held this Spring. Our goal is to raise $40,000 that DebRA will use for research funding and to assist other families like ours who are dealing with the daily struggle of EB.

Respectfully,

Andrew and Shawn Ripps Tavani

(Parents of an amazing little girl, Ellie Tavani)

I WOULD LIKE TO VOLUNTEER MY TIME

Meet Ellie Tavani
2011 School Picture