A mother has been left heartbroken after her son was diagnosed with a one-in-a-million neurological disorder that causes days-long paralysis and seizures.

33-year-old Mary Saladino and her husband, 48-year-old Anthony, were left devastated when their son Henry was diagnosed with alternating hemiplegia of childhood (AHC).

Their son, who is now 2, has fits of paralysis, often gets seizures, and has difficulty breathing.

The couple from Massachusetts is now working on developing a new treatment for the disease. However, it could cost them up to $9 million.

It was in January 17, 2020, when Anthony and Mary welcomed their son Henry. But as soon as child was born, they immediately noticed that something wasn’t right.

When Henry was 5 weeks old, Mary noticed that his arms had ‘gone stiff’ with his eyes ‘rolled up.

“I had my fingers ready to dial 911 when he started tracking me with his eyes again and I felt his soft little body start relax into a snuggle,” she said.

But only three days later, Henry experienced his first seizure.

“We put Henry under his playmat and my husband noticed the right side of his body stiffen and his eyes became fixed,” Mary recalled.

“Then, his little tongue started rhythmically moving in and out of his mouth and it was clear he was having a seizure.

“We took a video. To this day it is the hardest video for my husband and I to watch, because we can still feel the terror in that moment and now we know what we didn’t know then: that this was just the beginning.”

“This disease caused kids to become randomly paralyzed for unknown amounts of time,” she continued. “They seized, they stopped breathing, their heart struggled to maintain normal rhythms.

“This disease was like having seven neurological conditions in one.”

They started a foundation called For Henry and started raising funds online. “The goal of the treatment is to reduce the frequency and severity of Henry’s symptoms and to give his brain a chance to develop without battling constant symptoms,” Mary said, according to the Daily Mail.

“By launching For Henry and the development of this ASO treatment for him, we will learn valuable insights in this process that can be leveraged to help our entire community.”

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