Vermont brands create custom teddy bear to help 4-year-old with rare disease

SOUTH HERO, VT - Several well-known Vermont brands are rallying around a four-year-old boy with a rare and devastating neurological disease.

Companies such as Orvis, Johnson Woolen Mill, Commando, and Simon Pearce have dressed and accessorized a four-foot teddy bear named "Henry Bear" in order to raise funds for the treatment of Henry Saladino.

Seeking treatment for rare neurological disease

WBZ-TV met Saladino in Boston in 2022 when his family first started seeking a treatment for his rare neurological disease called Alternating Hemiplegia of Childhood (AHC). Henry's AHC causes weekly seizures and paralysis, which threaten to permanently damage his brain or take his life.

"One full day, every other week, life just stops, and we're grounded with oxygen. And then, once a month, he also has a very big, very long seizure," Henry's mom, Mary Saladino, said.

Since then, Henry's family has embarked on the uphill climb to treat Henry's illness with a therapy called an antisense oligonucleotide or ASO.

Scientists at the Yu Laboratory at Boston Children's Hospital are producing ASO candidates, microscopic synthetic strands of DNA and/or RNA that bind to the genetic mutation that is producing the protein causing Henry's disease.

"We are still optimizing the best ASO candidates and, at the same time, doing a screen in mice for toxicity," Mary said.

The process is risky and costly. In all, the Saladinos must raise $3 million dollars to pay for drug development. They are just over halfway to their goal.

Brands create fundraiser for young boy

That is why Mary, a Vermont native, called Ashley Farland, a former celebrity chef turned Vermont home-furnishings designer and the founder of DandyLion. Mary asked Ashley to create a custom Henry pillow. Ashley decided to take things a step further.

"I was like, yeah, I like this woman. We could definitely do better than a pillow," Farland said.

Farland reached out to Vermont Teddy Bear, and the idea behind "Henry Bear" was born. More and more brands started accessorizing the bear, which has custom Commando jeans complete with "H's" sewn into the pockets.

"I think Henry's story resonates, and I think people are good," Mary said.

On August 10, more than a dozen Vermont brands will join as part of Henry's Village, a dinner and concert fundraiser to raise money for Henry's treatment. The event will be held at Snow Farm Vineyard and Winery in South Hero, Vermont.

Henry will return the love the way he knows how.

"He loves the Eric Carle book brown bear, so we said you're going to have your own brown bear, and all these helpers are showing up for you, and his response was to look at the bear and give him a hand kiss," Mary said.

For more information on Henry's story, click here .