The Race Against Time: Helping Henry Receive Genetic Treatment for AHC
Dr Christelle Achkar, Henry’s neurologist, has spoken to CNN, expressing her inability to provide the infant with a better option to try and prevent him from having more seizures or episodes. Henry is one of those children who have an increased chance of passing away too soon because of their medical condition; if they are fortunate enough to stay alive, there is a fear of a severe decline in their health. Mary and Anthony, Henry’s parents, have started the non-profit organisation “For Henry” to raise $3 million so that the child can receive a genetic treatment, which if turns out to be successful will make the infant the case of AHC to be treated and will also open the path for others suffering from the similar disorder to receive treatment.
The family is racing against the clock to ensure that Henry gets the treatment before his brain is permanently damaged during one of his seizures. During these spells, the infant stops breathing on his own — sometimes for up to 15 minutes — or experiences paralysis that can last for days at a time.
This is Henry’s only chance.
0. “Family battles toddler`s neurological disorder that turns infants into `human time bombs`” WION, 13 Mar. 2023, https://www.wionews.com/world/family-battles-toddlers-neurological-disorder-that-turns-infants-into-human-time-bombs-571725