Race for Violet

“When my daughter, Violet, was diagnosed with AHC, I had no idea what that really meant for her. Everything I read about it was terrible and uncertain, but there were so many variables that were not yet realized at the time: Will she ever speak? Will she read and write? Will she be able to dress and bathe herself? I knew it was going to be awful. I didn’t know that I would be watching helplessly as she lost everything. When Violet was 4, she was in her prime. I didn’t know then, that this was as good as it would get for her. I often fantasized about all the things she would be able to do one day. At the time, she was able to walk around the house, she had about 50 words in her vocabulary, she could eat solid food, she sang, and played Peek-a-Boo. Now at the age of 8, she is wheelchair dependent, currently losing the ability to crawl, she is finding it harder to sit up unassisted, she’s completely non-verbal, and losing the ability to even eat purées. She has a feeding tube, and she continues to develop new symptoms all the time. You can consistently see physical evidence of her declining function. She’s tired, she’s in pain, and everything is difficult for her. I pray every day for her to find the strength to continue to fight. As her parent, I want nothing more than to help her, to make this better, to get back what was stolen from her, but I can do nothing. Every medicine we’ve tried has just made things worse. Doing nothing she gets worse. We’re stuck in this never-ending loop of loss and acceptance. I am grieving the loss of my child over and over again as AHC keeps taking more and more of her and from her. This disease is so devastating and there is no cure. We cling to the hope gene therapy brings. Our kids need your help and there is no time to spare.Join the Race to END AHC; race with us to give Violet back what she has lost.” Register & donate here: ahckids.org/race#steps4AHC#endAHC