Business community joins effort to help Vt. boy with rare neurological disease

BURLINGTON, Vt. (WCAX) – A local family’s efforts to save their son’s life after being diagnosed with a rare neurological disease continues, and now Vermont’s business community is hopping on board to lend a helping hand.

Henry Saladino is a happy boy whose growth continues despite his diagnosis.

“He is walking more and continues to say more words, which is a miracle because we were told when he was diagnosed that he would never walk or talk. So, he is the most resilient, joyful little boy,” said Mary Saladino, Henry’s mom.

Henry was diagnosed with alternating hemiplegia of childhood, or AHC, when he was an infant. “He continues to have three to five seizures a week, about three to five apneas every other week, and a very big, long, 20-minute seizure once a month, which is really life-threatening,” Saladino said.

Despite these immense challenges, Henry loves to laugh, play, and read books with his mom. “He is a sweet boy and he just does not deserve, you know, the prognosis of this disease. So, we’re committed to giving him the brightest future possible and saving his life,” Saladino said.

The Saladinos are working to raise $3 million for a life-saving treatment at Boston Children’s Hospital. So far they’ve raised $1.65 million from individuals and businesses in Vermont and around the world, more than halfway to their goal.

“We are truly in a race against time to save Henry and hope that in doing so, we can pave the way for others with his disease and related diseases to have the future they deserve,” Saladino said.

Dozens of local and national brands have jumped on board, including Vermont Teddy Bear and Ben & Jerry’s, to help the family.

“I think we all want to give, we just sometimes are overwhelmed by what we could do. And that’s what I think is the coolest message about this in general, is that this village — it does take a village and that whole mindset. People understand, but this is actually in action,” said Ashley Farland, who has helped spearhead the effort to get businesses onboard.

Meanwhile, Henry’s mom honors each day with her little boy, who just celebrated his four-and-a-half birthday. “I think when you have a child who is battling a neurodegenerative disease, every birthday matters. So, half birthdays matter, too,” Saladino said.

The Saladinos on Saturday are celebrating their efforts with a dinner, auction, and concert at Snow Farm Vineyard in South Hero. Dozens of local businesses are involved in the hopes of getting Henry and his family closer to their goal.

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