FAQs
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Alternating Hemiplegia of Childhood (AHC) is a one in one million degenerative neurological disorder that comes with a variety of symptoms varying in severity. Every case is different dependent on the exact gene mutation, which is why more research needs to be funded to get more answers.
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AHC can be difficult to diagnose because the symptoms can present as other neurological conditions. AHC is known as the “mother of all neurological conditions” because it consists of symptoms akin to Cerebral Palsy, Parkinson’s, Epilepsy, Alzheimer’s, Stroke, Autism, and ADHD.
Most commonly, a genetic testing panel will reveal a mutation in the ATP1A3 gene.
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There is no cure for AHC… yet.
Currently, treatment is targeted toward the specific symptoms of each individual patient. For example, one of Archie’s symptoms is epilepsy, so he takes daily anti-seizure medications to prevent his focal seizures.
There are multiple specialists and researchers working rigorously to develop a form of gene therapy. This potential cure would not only help AHC champions, but so many other children suffering from rare genetic disorders.
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AHC is a one in a million genetic disorder. While doctors and specialists are making breakthroughs every day, the funding for further research and trials is reliant on the efforts of AHC families. The science is there to fight for a cure, but the funds are not.
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The best sources of information can be found by contacting the two foundations linked below. They are leading the global research and treatment efforts for AHC.