CT family seeks funding to find cure for young son’s disease

DARIEN — The discovery of a rare and debilitating condition in their young son earmarked a monumental turning point for one Darien family.

Yet possibilities for scientific breakthroughs slowly approaching on the horizon—as well as the heartfelt care being felt from their community—are helping guide them toward a very hopeful vision of the future.

“I think everyone is so empathetic and really eager to support us through this time,” explained Jennifer Handt, who—in conjunction with the Fairfield County’s Community Foundation—has embarked on an extensive initiative to help generate a cure for Duchenne muscular dystrophy.

She and her husband Rick moved to town in 2013.

At that time she’d never heard of Duchenne, nor ever expected her second child — Charlie, age 3 — would be challenged with its diagnosis.

Ironically, her first-born son Henry, a fifth-grader at Hindley Elementary School, was early in meeting most of his developmental signposts as a baby and toddler, unlike Charlie.

“In his first year of life we noticed he wasn’t meeting milestones, and that can either be something or nothing,” Handt said, noting in particular that he was late to walk.

“By the time he was approaching his third birthday in the summer, the nagging feeling just increased and I felt I really needed to get him fully evaluated,” she said.

Duchenne is a genetic condition much more common in males that leads to muscle deterioration. A progressive condition, most children who get it will be wheelchair-bound by their early teens, with heart and breathing issues sometimes to follow.

“Currently our son has some symptoms but is still mobile,” Handt said.

Rather than just waiting to see how things will unfold, however, she and her husband have gotten active with raising funds to go toward research, advocacy and awareness.

“I really feel like Darien is a place where people are ready and eager to help their fellow neighbors,” she said, noting that many have already stepped up.

Their friend Elisabeth Drew of Darien got the ball rolling with an 18-mile fundraising run from Ridgefield to Darien that raised more than $9,000.

“When Jen shared with us that Charlie had been diagnosed, I felt helpless,” she said, deciding to use the fundraiser for Cure Rare Disease as a chance to also help the family let friends and the community at large know what was happening with them.

“What blew me away was Darien’s incredible response,” she said. “In just four days we had surpassed our goal, and within nine days we doubled our goal.”

“Darien is just that type of community,” Drew said. “People want to help.”

“The road to Charlie’s therapy began with an 18-mile stretch … and that money went right to Duchenne research,” Handt said.

Ironically, the nephew of Handt’s other close friend, Sarah Lubeley of Darien, was diagnosed with Duchenne the year prior.

This not only cemented a bond between Lubeley and Handt, but aided Handt and her husband in moving forward with their response to Charlie’s diagnosis.

“What struck me immediately,” Lubeley said, “was how any diagnosis impacts the whole family, and therefore how important a strong and widespread support system is.”

“At first it was almost unbelievable that both my sister and Jennifer were going through the same thing,” she said, noting it brought her a terrible feeling of bad luck to her initially.

“But I quickly realized how lucky Liz, my sister, and Jennifer were to have a connection to each other,” Lubeley said, “and that by working together, these two powerful, smart, and fierce women would move mountains to help their own children, and in turn, help all the children facing a rare disease diagnosis.”

While Handt will strive to make the upcoming national Rare Disease Day on Feb. 28 an important rallying point for people in town and throughout the area, she and her husband are also giving specific attention to the fund they’ve started through the FCCF to get money in the hands of organizations doing work toward curing Duchenne.

“Jennifer and Eric are passionate about identifying high-performing nonprofits focused on research and treatment of DMD, and I know will be making astute grant-making decisions through their new donor advised fund, The Charlie’s Cure Fund,” said Karen Brown, vice president of development and philanthropic services at the Norwalk-based FCCF.

She explained that donor advised funds were an alternative to forming a full foundation or nonprofit, giving young families a chance to conduct tax-advantaged targeted philanthropic endeavors aided by the knowledge and network of FCCF.

“The Handts are an example of a family that has taken the initiative to make a difference while facing a personal family challenge,” Brown said. “As a parent of two boys myself, I find that very inspiring.”

“Genetic treatments are so close on the horizon,” Handt said, noting how Charlie’s chances of recovery have improved vastly in 2021, compared to those children diagnosed 10 years ago.

Still, she said, funds are needed for ongoing research and policy work related to finding cures.

“Awareness is important, because so much needs to change,” she said.

That’s why the family will continue to put its heart into expanding The Charlie’s Cure Fund through FCCF.

“It’s hard for me to ask for help sometimes but in doing so you realize how much strength there is in the community,” Handt said. For more information, or to help, visit curecharlie.org.