Our daughter Riley, great-granddaughter of Betty Manning, was diagnosed with Alternating Hemiplegia of Childhood (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 3 1/2 years old now, and we have been living with the diagnosis for three years. 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. Every episode of our daughter has to suffer like this breaks our hearts. 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.