Mission
For Henry AHC's mission is to fund research to develop a treatment for Henry and others with AHC. Our current focus is funding research to design an antisense oligonucleotide (ASO) treatment for Henry and to forge a path for ASOs to be developed for all others with AHC and other similar rare genetic neurological diseases.
Total Funds Raised $1,648,974
$880,481
Website
$719,715
Gofundme
$50,000
Henry's Village
Our Story
Early Days
Henry was born three weeks early on January 17, 2020. We were delighted to hear his cry, though we quickly knew something was wrong as the room hushed. We did not know it at the time, but Henry was experiencing his first symptoms of AHC, as upon the transition of entering the world, Henry needed some additional breathing support.
Current Update
Henry struggles the most with frequent tonic clonic seizures, every 3 days or sooner, and he stops breathing with each. We live in fear every day not knowing what symptoms might hit. We fear he will have a tonic clonic seizure we won’t be able to stop, or that his paralysis will be so severe and prolonged that it will lead to temporary or permanent regression.
Henry's Future
If we live our life based on what Henry tells us, it promises to be joyful, full of laughter, dinosaur noises, and dancing. If we live our life based on what AHC tells us, it promises to be challenging, terrifying, and life threatening.
Support Henry
Your financial support can make a life-changing impact on Henry's life, giving him hope for a brighter future. Every donation counts and could make all the difference in the world for Henry and other children like him.
Support a program
With your help, we can fund the research and development of a treatment for AHC, and provide Henry with a chance at a normal childhood.
