Steps for Sotos to raise money for first-of-its-kind MGH clinic

Jayme and Sophia Betts at last year’s “Light Up for Sotos” fundraiser, which raised $250,000 to open a Sotos Syndrome Clinic at Massachusetts General Hospital. Sophia, 7, was diagnosed with Sotos Syndrome, a rare genetic disorder, at 18 months old. (Courtesy photo/Marcie Randall)

When Sophia Betts was born, her mother said she had a bewildering mix of medical complications, including autism, visual impairment and epilepsy.

It wasn’t until Sophia was 18 months old that doctors diagnosed her with Sotos syndrome, a rare genetic disorder that affects one in 14,000 children characterized by rapid childhood growth and several co-occurring medical conditions, including those Sophia was diagnosed with.

Sotos syndrome is named for Juan F. Sotos, a pediatric endocrinologist at Massachusetts General Hospital who published the first scientific paper on the disease in 1964, according to Mass General Brigham.

After seeking out support associations and specialists, Sophia’s family moved to Weston in 2020 to work with Massachusetts General Hospital geneticist Dr. Angela Lin, who helped the Betts family care for Sophia.

As Jayme and Robert Betts struggled to find support for Sotos syndrome, they organized a “Light Up for Sotos” fundraiser that raised $250,000. The money helped open Massachusetts General Hospital’s Sotos Syndrome Clinic, a first-of-its-kind clinic dedicated solely to supporting patients with the rare disease.

“We felt there needed to be an infrastructure in place for new families,” Betts said, adding that the clinic has already seen eight patients and is booked through the end of the year. “It’s so important to have doctors who don’t treat you in a vacuum separate from Sotos. Sotos affects every aspect of a kid’s body.”

After a grim prognosis – “It was presented as a very dire situation,” Jayme Betts said – Sophia is now a 7-year-old second grader at Woodland School with a big personality, thanks to the treatment she’s received in Massachusetts.

“They did not give a lot of optimism when talking to us. It turns out seven years later, she’s amazing and doing great,” Betts said. “She’s the most joyful girl.”

*The Betts Family, from left: Jayme, Chloe, Robert and Sophia. (Courtesy photo/Jayme Betts)*

Now, less than a year after the Sotos Syndrome Clinic opened, the Betts family is appealing to the community again with a new walk-or-roll-athon fundraiser, “Steps for Sotos,” which will raise money for the clinic.

The event is scheduled for Saturday, Sept. 19, from 4 to 7 p.m. at the track on Proctor Field at Weston High School, 444 Wellesley St. All members of the public are invited, and tickets are $25. Alongside the walk, there will be food, kids activities and DJ Christopher Sealey will be playing music.

Betts said they have already raised $100,000 and their goal is to raise at least $150,000. Several local businesses have also offered support, with Theo’s Pizzeria and Grille donating food, a pre-walk warm-up led by Intuitive Wellness and raffle donations from Crush Boutique, Weston Provisions, Brothers Marketplace and Wayland’s Coach Grill. Weston High School student volunteers are also helping run the event.

“It’s really important for me that Sophia feels the support from the community growing up… We’re touched; there’s not a significant enough way to say it,” Betts said. “I also see it as an opportunity for the kids in our community to rally around a friend and learn about supporting friends and learning about differences.”

Leslie Bateman, who will be emceeing the event with her husband Rob, met the Betts when their children enrolled in the same pre-K class. After the Betts’ work in advocating for their daughter inspired them, Bateman said she and her husband offered to emcee the original “Light Up for Sotos” fundraiser.

“We’ve been beside it and observing the really hard and wonderful work she is doing, and also observing what a difference it is making,” Bateman said. “Without hesitating, I would do absolutely anything to support Jayme and Sophia and what they’re building.”

Bateman encouraged residents, especially those with children, to support the fundraiser because it is a chance to support a peer and start a community conversation on “embracing other kids in our community that are different.”

“Events like this, everybody can come out, it’s fun, it’s entertaining,” Bateman said. “It’s a really great message not only for families to come together to support someone in Weston that we respect and adore, but it’s also a great way for the kids to get involved.”

For more information about Steps for Sotos, visit its Instagram page at @stepsforsotos.