Our daughter Riley was diagnosed with AHC when she was 8 months old. She had her first episode at 3 months old, and we spent the next 5 months trying to find answers. AHC is so incredibly rare that most doctors have never heard of it; we only received the diagnosis after we had to push for extensive genetic testing. We just knew something wasn't right.

Riley is a year and a half now, and we have been living with the diagnosis for just under a year. She is a funny, smart, and beautiful little girl who is learning new things every day. However, when she has an episode, life stops. She spends days crying uncontrollably, suffering from painful dystonia and eye movements. She gets incredibly frustrated because half of her becomes paralyzed. She has difficulty swallowing, eating, and drinking. She can't sit or stand during episodes and has to be carried 24/7. Her only relief is sleep. The kicker is that Riley is considered relatively mild so far- many of her fellow AHC warriors have it so much worse.

As a parent, one of the saddest things you can see is your child suffering. It breaks our hearts every episode that our daughter has to suffer like this. When we attended the AHC Family Meeting in June 2023, we learned that there are viable therapies and promising treatments- the money just isn't there yet. As she gets older, she understands more and more. We don't know what the future holds for Riley, but we will never stop fighting for her and all of the kids who are affected by AHC.

Through research, education, and family support, we have ONE MISSION: END AHC.

Through these three pillars of our mission, the AHC Foundation works to provide our community support and hope as we all move through this journey. Funding RESEARCH from small studies to gene discovery, to collaboration on landmark gene therapy that holds much potential; providing EDUCATIONAL resources to families through support groups, introductions to physicians, and our website; SUPPORTING FAMILIES through our support group, biennial family meetings, and availability of volunteers for crisis; are all ways the AHC Foundation works to END AHC. 

Join us in fundraising to continue to provide resources to families, fund research with high potential, and raise awareness of this rare disease.