Elodie was born in July 2016 and within a few hours she took her first ambulance ride to a hospital 45 miles away. Elodie was diagnosed very quickly – within a week we had the genetically confirmed diagnosis of Recessive Dystrophic Epidermolysis Bullosa. But even armed with that information, it took weeks and months to begin to understand what this diagnosis means for Elodie and for us. It means twice daily bandage changes, it means a moment of fear every morning as we walk into her room to see what she has done to herself overnight. It means sharps containers in every room and needles handy to attack a blister at any moment. It means cringing when we see how other parents handle their children, mentally cataloguing the damage it would do to Elodie. But what it doesn’t mean is that Elodie brings us any less joy.
People that meet Elodie often remark with a note of surprise that she is happy. She IS happy. She laughs, she plays, she babbles entire paragraphs. She has a lot to say and we can’t wait to find out what it is. She doesn’t yet understand EB, so she can’t see how some people look at her or understand the questions they ask. We can protect her from that for a little while longer. Our goal and challenge is to foster her spirit so that it is never dampened by the realities of EB.
We believe that, in the end, Elodie will be one of the lucky ones. She was born at a time when medical science is laser-focused on genetic conditions. For a disease with so many complications, the genetics of EB are relatively uncomplicated, which increases the likelihood that a cure will come. And we are not powerless to do something. The foundation for a cure and a treatment for Elodie has already been built by EBRP. The progress made in the last ten years is nothing short of remarkable. Our job is to make sure that this progress continues and the goal of a treatment or cure by the time Elodie is in grade school remains attainable.
- Emily and David, Elodie's Parents