Although we have not yet met in person, your strength and determination to find a cure for LBSL gives me so much hope. Just days after we received the LBSL diagnosis for Parker, I was angry, sad and so hopeless when I came across your website for “A Cure For Ellie.” You immediately took me under your wing and talked me off the ledge I was hanging onto.
Anytime I have a question, concern or worry, I know I can send you a text or call you and you will tell me about going through the same experience for your first time with Ellie. Just talking to someone who is going through something that it seems sometimes that no one else understands, gives me continued strength to carry on for my kids.
I look forward to when we meet in person and I am so grateful for all your help and your passion in finding a cure for Ellie and everyone else in the world with LBSL. Let’s never give up until we find A Cure For Ellie!
You are my Hero!