This toddler is suffering from a rare “one in a million” neurological disorder known as alternating hemiplegia of childhood, or AHC. The disease turns kids into “human time bombs” who can die or become paralyzed at any moment.
AHC: The rare disorder that turns people into human time bombs
Alternating hemiplegia of childhood, or AHC, is an ultra-rare neurological disorder that can instantly cause death or paralysis.
Doctors refer to AHC sufferers as “human time bombs” because of the unpredictability of the condition, which can cause violent, life-threatening seizures, cessation of breathing, or paralysis in patients with the disease.
There is no treatment or cure for AHC, which affects roughly one in a million people globally, and doctors have no way of knowing when an episode will strike or whether a patient will survive when it does, Yahoo reported.
AHC shows up in childhood
Some of the symptoms of the AHC are similar to those that occur during strokes (cerebrovascular accident, or CVA) in terms of causing weakness or paralysis that may affect one side of the body (hemiplegia) or both sides of the body at once (quadriplegia).
However, AHC differs in that strokes are typically something that affects older people, while the first symptoms of AHC usually begin before the age of 18 months.
AHC is a disorder characterized by repeated episodes of weakness or paralysis, as well as intermittent abnormal eye movements, episodic muscle stiffness, and seizures in a substantial percentage of cases, according to Rare Diseases.org.
A documentary video entitled “Human Time Bombs” offers some insight into the disease and what children with AHC suffer.
Family racing to raise $3 million to save their “human time bomb” toddler and create a treatment for sufferers
One family is racing to raise $3 million to save their three-year-old son, Henry, who suffers from AHC. His condition is so pronounced that nearly every day, his mother witnesses Henry waver on the brink of death, often paralyzed and not breathing, CNN reports.
Henry’s mother and father, Mary and Anthony Saladino, launched a nonprofit foundation in 2022 called For Henry AHC with the goal of raising $3 million to develop genetic treatment. If successful, it could be the first ever to treat AHC, paving the path for others to receive treatment and live with the disorder.
Along with the foundation, the couple also launched a GoFundMe fundraiser seeking $2.5 million for the purpose of designing an antisense oligonucleotide, or ASO treatment, from scratch, aimed at knocking down the toxic impact of a genetic mutation that is causing the dysfunction in Henry’s brain.
The family is racing against the clock. Every seizure Henry experiences and every time he stops breathing risks irreversibly damaging his brain.
