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experience the capability of the complete line of suvs at the invitation to lexus sales event. parents of a toddler who suffers from an ultra rare neurological disorder are racing to develop $2.5 million in an effort to develop an experimental treatment that may help their son survive. henry suffers from ahc. there are only 1,000 sufferers worldwide and people with ahc ....
Constantly prepared whenever he has a seizure, she s almost ready to say her last words to him and i think that s something that no parent or anyone with a loved one can imagine, just being prepared to share your last words with someone while you re saving their life, let alone your baby. it s just a really, really difficult and heartbreaking reality they re dealing with. i can t imagine. can you talk a little bit about what ahc is? reporter: absolutely. ahc is a neurological disorder. it affects one in a million people. there are currently about a thousand people worldwide who have it but most likely there are more that have gone undiagnosed. henry s condition is a very specific mutation in his brain. he has life threatening seizures very frequent and regular spells where he is not breathing. and he also has a lot of motor ....
Delays. it takes a lot of work for henry to learn how to talk and how to eat, how to even breathe, how to walk. these small things that, you know, for a lot of toddlers just come naturally, henry s brain works incredibly hard to do it. it works so hard that the worst part is that it can be triggered by any and everything. when he was a baby, he would seize every single time that he took a bath. sunlight can trigger seizures, excitements can trigger seizures. birthday parties, holidays, celebrations, families with ahc think twice before doing things because they have no idea if the excitement will cause a seizure. it gets worse as you age. again, the fear is that henry, if he does not receive this treatment, he will have permanent brain damage that all of these things will be ....
The moment that he meets them. henry also suffers from a rare neurological disorder, which is a severe type of ahc, in which patients are referred to as a human time bomb. at any moment henry can stop breathing on his own, sometimes for up to 15 minutes. he can also have up to 30 life-threatening seizures a day. henry can even become paralyzed, which can last for days at a time. there s no way to know when it will happen or if he will survive. no treatment or cure exists for ahc, which affects one in a mill people globally. but last year, henry s parents, mary and anthony, launched the non-profit foundation for henry to raise $3 million to develop a genetic treatment. if it works, this could be the first therapy to treat ahc, as ....
And looking at his pictures, he looks like he rises above all of it with his smiles. i m sure that brings you a lot of energy and it s inspiring you to keep going but how do you do it? you re absolutely right. i think henry first and foremost is the most joyful, resilient little guy. for those who have met him or who see him daily on our instagram, we try to chronicle the ups and downs on an app for little henry s ahc. beyond that we have an incredible network of friends and nurse and beyond that our incredible ahc agency for henry. we also work with care ahc and hope for annabelle. ....