Community Rallies Around Colchester Family Fundraising for Treatment of Child's Rare Disease 

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• Courtesy Of David Seaver
• Henry Saladino with his custom Vermont Teddy Bear and other benefit merch

Mary Saladino lives in fear of her 4-year-old son's next seizure. Several times a week, she struggles to comfort Henry as his body convulses; sometimes, his breathing becomes labored. Henry's condition also periodically leaves one of his arms temporarily paralyzed.

Henry has alternating hemiplegia of childhood, or AHC, a neurological condition that affects one out of every million people. There's no cure, and treatments for the symptoms are extremely limited.

"You can go from your child playing to Oh, my God, you're not breathing," Saladino said. "It impacts daily life in a way that you almost can't even imagine."

But there's hope for Henry. A lab at Boston Children's Hospital is developing a novel treatment for him called an antisense oligonucleotide, which would target the genetic mutation that causes Henry's disease.

The estimated price tag for its development: $3 million. No pharmaceutical company stepped up to fund the research, so in 2022, Saladino and her husband, Anthony, started a nonprofit called For Henry to raise the money themselves. They've already received $1.6 million in donations through their website and a GoFundMe.

Now, a group of roughly 30 Vermont businesses — dubbed Henry's Village — has chipped in by donating food and entertainment for a fundraiser on Saturday, August 10, at Snow Farm Vineyard in South Hero. The event will feature dinner, a silent auction and a concert by singer-songwriter Kat Wright.

Nick Lane, event coordinator at Snow Farm, is giving the Saladinos free use of the venue, which would ordinarily be reserved for a wedding.

"We certainly can't give away weekends like this all the time," Lane said. "It just seemed like fate brought them in the door at just the right time."

Some of the participating businesses are also creating and selling Henry-themed merchandise. Vermont Teddy Bear customized a four-foot "Henry bear" outfitted with clothes and accessories from other Vermont brands supporting Henry, such as Orvis and Commando. At ecobean in South Burlington, all proceeds from a peanut butter and jelly smoothie go toward the For Henry nonprofit.

"The support we've received from this community of Vermonters has been overwhelming," said Saladino, an Essex native who returned home after living elsewhere in New England. "It's why we moved back: that feeling of knowing how to show up for your neighbor."

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• Courtesy
• Mary, Anthony and Henry Saladino

Henry's Village began to take shape when Saladino cold-called Ashley Farland, founder of the Hinesburg home furnishing company DandyLion, after reading an article about her in Seven Days last fall. Saladino asked Farland to design a pillow for Henry. Farland agreed, but she also had grander visions and began reaching out to other businesses.

Farland and Saladino's efforts would soon pay off. After the duo emailed Henry's story to a list of philanthropic individuals, a well-known investor on the TV show "Shark Tank" donated $50,000.

Saladino "has more grit than anyone I've ever met," Farland said. "When she says she's not gonna accept the prognosis that they've given, she means it."

A former high school vice principal in Rhode Island, Saladino now cares for Henry and runs the nonprofit full time. Peter Bingham, one of Henry's doctors and a pediatric neurologist at the University of Vermont Children's Hospital, said that kind of advocacy is increasingly common among parents of children with rare diseases, who may find themselves bridging funding gaps when pharmaceutical companies won't put money behind the necessary research.

"Market forces don't necessarily lead to the development of treatments. That's sort of a sad and unfortunate thing about the way health care financing works," he said. "In many cases, [parents] do turn out to be advocates on a broader level and activists kind of knocking on doors."

The federal government subsidizes the research and development of what are known as orphan drugs, or medicines that would be unprofitable to manufacture because of the small number of people affected by the condition. Still, of the 7,000 identified rare or neglected diseases, only 500 have treatments approved by the U.S. Food & Drug Administration, according to the National Institutes of Health.

"This is very different from a disease that affects many people, like breast cancer, where you get a diagnosis and you're given treatment options," Saladino said. "In the rare-disease world, it's totally normal that a mom who has a master's degree in education is now developing a genetic therapy and raising $3 million for her son, which is wild."

Henry's plea is urgent: His condition is likely to get worse over time, and any one of his attacks could lead to permanent brain damage or death. People with AHC are sometimes referred to as "human time bombs" because of the life-threatening symptoms that occur without warning. In the absence of treatment, doctors have told the Saladinos that Henry is unlikely to live past his teenage years.

For Saladino, the unpredictable nature of Henry's disease is a constant source of anxiety. Wherever he goes, Henry is never more than 20 feet from a backpack filled with medical equipment, in case he needs to be resuscitated. He sleeps between his parents, hooked up to a machine that alarms when his oxygen or heart rate gets too low.

Still, the family tries to live life to the fullest. Henry loves reading, walks outside and blueberry waffles. He attends preschool, music therapy and swim classes at the YMCA, where he spends the last five minutes of every session hugging his teacher.

Henry won't be able to attend his fundraiser in person, because too much stimulation, especially late at night, can trigger a seizure. Despite this and his limited speech capabilities, Saladino said Henry knows about his village of support.

"We love to tell Henry about the story of all the people who are showing up for him," she said. "Every time, we tell him, like, 'They're going to donate pizza for your event, isn't that incredible?' He'll look at you and smile."