Our Story

Our life with AHC is far from anything we could have ever expected when Henry was born. Although Henry's symptoms have evolved over time, they continue to be life threatening and losing Henry remains our worst fear. Henry is predominantly affected by seizures, at least once or twice a week, which cause him to stop breathing. We have used every tool available to us to stop his symptoms and none have proven successful as is common with AHC. We have found ourselves in the same position as many other rare disease parents on quests to save their children, in our efforts to fund and develop this treatment for Henry on our own, with our incredible partners. We have great hope that this treatment will work for Henry and pave the way for many others with AHC and related diseases to be treated.