It has been a year since Theo was diagnosed with Alternating Hemiplegia of Childhood, AHC. This past year has been a rollercoaster, celebrating with Theo as he reached his milestones and crying with him as he endured painful episodes.

As Theo gets older, we see how AHC steals not only his basic abilities to eat, sit and crawl, but also takes away his ability to experience life as a toddler should. The latter became a reality for us earlier this year when he wasn’t able to enjoy a simple train ride at a theme park, which required him to sit on his own. He was in a mild episode that stole his ability to sit up. It’s such a basic experience and may not seem like a big deal, but it broke our hearts because that was the start to many more life experiences Theo will miss out on because of AHC.

So, we pray for a cure. We race to end AHC for Theo and all his AHC friends.

The Race to END AHC is on! For over 25 years the AHC Foundation has been in the race to treat or cure AHC for all our AHC kids. It has been a long race, and the foundation has covered much ground by taking many steps toward that goal. 

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 the 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 fundrasing to continue to provide resources to families, fund research with high potential, and raise awareness to rare disease. 

www.ahckids.org/race