Why am I running the Marathon?
Because I can, because I will do anything in my power to help find a cure for EB.
Today Layla is doing well. Her EB is there and we manage it as needed. However, the first couple years of her life that was not the case. Not a day goes by that I do not reply this memory in my head, just like watching a movie.
It was shortly after Layla had been released from the NICU and we were home, trying to understand her diagnosis and what EB truly was. Her legs, feets, arms and hands were still missing the skin and trying to heal. I really had no idea what I was doing. My dad spent a lot of time with me and Layla (as did many others - and we are grateful for each person that helped). He was in town helping me with dressing changes. This dressing change was a particularily tough one. Over two hours of newborn squirming and crying. All the while, I am trying to clean wounds, pop blisters and rebandage. It was horrible. I handed Layla to my dad after the change was over and just fell to my knees and cried. I cried for a long time. One of the hardest things for me when Layla was a baby and still at times now, was the pain I knew I was inflicting on her when I had to do changes. As her mom, I just wanted to make it better, make it go away and I couldn't. After Layla settled down, my dad came in and told me "It is going to be okay" I remembering crying and yelling "no it's not". But like any great dad, he was right. Today it is okay for us and for Layla.
But for too many babies, children and adults, it isn't okay - they don't get better. This memory that plays in my mind, is their every day! We need a cure and we are close!!! I am running because I want everything to be OK and the pain of EB to just be a memory!!!! I truly appreciate any support you can offer.