Henry Saladino, a three-year-old toddler, is afflicted with alternating hemiplegia of childhood, generally known as AHC, a rare neurological disorder whose sufferers are referred to as “human time bombs.”
Mary Saladino spends most of her days cuddling her kid while he violently convulses and whispers to him to save his life. Almost every day, she sees her infant on the verge of death, not breathing, and frequently immobilized.
Child With Rare Neurological Disorder
Henry, her 3-year-old son, has alternating hemiplegia of childhood, or AHC, a rare neurological condition whose patients are called human time bombs. Henry could stop breathing, suffer a life-threatening seizure, or become paralyzed at any time, and there is no way to predict when or if he will survive.
According to AHC expert and neurologist Dr. Kathryn Swoboda, AHC affects one million people globally, and families of patients with this unpredictable disorder are continuously on the lookout for signs of an imminent episode. When cancer strikes, lifesaving measures must be administered immediately.
Despite its name, AHC does not exclusively afflict children. According to Swoboda, it only worsens with age, with patients frequently forgetting much of what they learned as youngsters, such as walking, speaking, and eating independently.
The Charitable Organization
Mary and her husband Anthony established the non-profit organization For Henry in 2022 in order to fund $3 million for a genetic treatment that, if successful, would be the first to treat AHC and pave the way for others with the illness to obtain treatment.
Via their foundation and a GoFundMe campaign, the Saladinos are seeking the remaining $2.5 million required to build from scratch an antisense oligonucleotide (ASO) medication that would neutralize the toxicity of a genetic abnormality causing Henry’s brain malfunction.
The family is racing to create and deliver the medication before one of Henry’s fits causes irreversible brain damage. Neurologists say this danger increases each time Henry survives another seizure in which he stops breathing on his own for up to 15 minutes or experiences paralysis that can continue for days.
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What Does AHC Do?
Henry is dancing and singing while his parents clothe him in pajamas in a second. Suddenly, half of his body becomes immobile and the other half violently convulses while his parents rush to deliver medications and oxygen.
The episodes can be triggered by a number of factors, including a bath or exposure to sunshine, although stress or excitement are the most common. Holidays, birthdays, and even play dates can be too much for Henry, according to his parents, who must witness him change from joy to suffering during their happiest times.
Swoboda reports that three mutations, including Henry’s, account for 75% of AHC cases. 163 distinct mutations in the ATP1A3 gene can cause AHC. The ATP1A3 gene encodes a sodium-potassium pump that is essential for maintaining a proper electrical gradient in all brain neurons. That is quite crucial.
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