PORTSMOUTH, R.I. (WPRI) — When Mary Saladino went on maternity leave in January 2020, she never imagined she wouldn’t return to Portsmouth High School.
Shortly after she gave birth, the former vice principal’s son was diagnosed with a rare and severe neurological disease called alternating hemiplegia of childhood (AHC).
“My husband and I were just crying,” Saladino recalled. “There aren’t even words to describe that. Not only does your child have a random illness, it’s also so severe that he will likely never walk or talk, and there are no treatments or cures.”
Now 2 years old, Salidino’s son Henry suffers from multiple seizures a day, as well as paralysis, breathing issues and painful stiffening of his body.
Saladino and her family moved to Massachusetts to be closer to Boston Children’s Hospital, where they endure biweekly trips to the ICU.
Despite it all, Saladino said her son is resilient.
“He will endure life-threatening symptoms. He will be resuscitated,” she said. “He will come out of a seizure just seconds before we need to intervene and he will laugh, or he will start giving everyone in the room kisses, or he’ll start dancing, or he’ll put his little hand to my mouth and look at me like, ‘Woah mom, that was a doozy. We made it.'”
Saladino said about a year ago, they learned of a treatment that could reduce the severity and frequency of Henry’s seizures, among other symptoms.
It was a glimmer of hope for Henry’s future that Saladino and her husband never thought possible. The treatment, called ASO, specifically targets the genetic mutation that causes Henry’s illness.
The only problem, according to Saladino, is the treatment comes with a $3 million price tag.
“To go from hearing your child has a disease that’s not treatable and experience the horrific symptoms, then hear, ‘Actually, there is a treatment, it could be developed…’ We just believed that if money is our only hurdle here, we’re going to find the money.”
Saladino kicked off a fundraising campaign this past January. So far, the family has raised more than $100,000.
But the family must raise at least $1 million by July for Henry to participate in the first research phase.
Even though Saladino was forced to abruptly leave Portsmouth High School, her students never forgot about her.
Upon learning of her family’s hardships, the student council knew they had to help Saladino in any way they could. The students ultimately decided to sell Valentine’s Day grams to raise money for Henry’s treatment.
Students, faculty and staff also wore red not only to raise awareness for AHC, but also to support Henry.
“It shows the dedication and the heart that they have … especially on Valentine’s Day, for people who are no longer here, but are part of our family,” student council advisor Evan Denard said.
Thanks to the high school, Saladino is $700 closer to her goal.
“To see my former coworkers wearing red and my former students … sometimes that’s the only thing that gets us through the hard moments, is knowing that there are people who love us and love Henry, even if they only knew him when he was in my belly,” Saladino said.
February is Rare Disease Awareness Month. The Saladinos hope the money they raise for Henry’s treatment will not only help him, but also blaze a path to develop ASO treatments for others with AHC.
Those interested in donating can do so online or send a check to the following address:
Rare Village Foundation
Memo: For Henry
6808 Old Glory Court
McKinney, Texas 75071