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What would you do if you were told when your baby was 9 weeks old that he had a rare, genetic, incurable disease and might never walk or talk?
What would you do if you learned months later that the science to treat this disease is available, you just have to raise funds to make it happen?
Answer: You would do absolutely anything in your power to develop a treatment to save his life.
This is our reality, and that is exactly what we are doing. Our son, Henry, was diagnosed with a rare, one-in-a-million, severe, neurological disease called AHC. As with most rare orphan diseases, ours lacks funding from industry so we have to raise the funds on our own to develop a life-saving treatment for Henry. The cost is $3M to develop this gene therapy for Henry. We are in a race against time to get Henry treated before he suffers permanent brain damage as a result of this disease.
AHC causes life-threatening seizures, breathing trouble, random bouts of temporary paralysis, and global developmental delay. Any or all of these symptoms can hit at any time, having the potential to cause permanent brain damage (we are very lucky that despite Henry’s frequent symptoms, he has not yet suffered this irreversible damage). Henry has these life-threatening seizures and stops breathing nearly every day. AHC is a degenerative disease which means we risk losing parts of Henry that we can never get back and we are determined to stop this.
AHC is like having 7 neurological conditions in 1:
- Paralysis like a stroke
- Seizures like epilepsy
- Low muscle tone like cerebral palsy
- Movement problems like Parkinson's
- Neurodegeneration like Alzheimer's
- Behavioral issues like ADHD
- Learning challenges like autism
Please help us by sharing our story and donating to our fund so we can not only save our son's life, but also create a pathway for future AHC patients to receive treatment.