A set of Darien High School twins has organized a fundraiser in honor of another set of twins who are their classmates and lifelong friends.
DARIEN, CT — The power of friendship and community will be on full display Sunday, Sept. 21, at Darien High School for a campus walk fundraiser to benefit the Dravet Syndrome Foundation.
DHS seniors and twin brothers Chris and Ryan Thurlow have organized the event in honor of another set of twins and their lifelong friends, Jeremy and Miles Clark, also DHS students, who were diagnosed with Dravet syndrome at 6 months old.
According to the Dravet Syndrome Foundation:
Dravet syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a medication-resistant developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating symptom burden that significantly impacts individuals throughout their lifetime.
A rare disease, Dravet syndrome has an estimated incidence rate of one in 15,700. Seizures associated with Dravet syndrome typically begin during the first two to 15 months of life.
Seizures are frequently prolonged, and are not well managed with current medications.
The two sets of twins have been friends going back to kindergarten when they first met.
“The bond between twins is so strong,” Chris told Patch this week, “and we really started bonding with each of the boys just separately in our classes. They always had a smile on their face, they were always just having the best day, nothing could bring them down, and that’s something that really attracts everyone. I just immediately wanted to be friends with them. They just brightened my day, and I brightened theirs. Our friendship really grew from there.”
When they were younger, the Thurlows and Clarks would have playdates and attend birthday parties together – something Ryan said had a big impact on him.
“We were really inspired and it also gave us a different perspective on life that people are going through things that we have no idea about, and it kind of sparked something in us,” Ryan said. “We wanted to pursue our relationship with them so we continued to look after them and have them as our own friends.”
Miles had transferred to a special school, but recently came back to DHS. The Thurlows wanted to hold one last big fundraiser before they head off to college in fall 2026.
“We’re such good friends with them and we’re graduating this year, and they’re not,” Chris added. “We want to make sure that we leave them behind to a loving and kind community, and amazing friends that they can still love and hang out with even if we’re not still in school.”
Sunday’s fundraiser at DHS will begin at 12 p.m. and feature a small ceremony before the walk with remarks on behalf of the Dravet Syndrome Foundation from Chris and Ryan, as well as Lindsey Clark, the mother of Jeremy and Miles.
The walk will then take place on the cross country path around the DHS campus.
Earlier in the day, the DHS football team will be hosting a carwash at DHS from 10 a.m. to 12 p.m. with a portion of proceeds going to the Dravet Syndrome Foundation.
Additionally, DHS sports teams and clubs are being asked to participate in a fundraising challenge, with the largest contributors winning a donated JBL Partybox Speaker.
Dunkin Donuts will sponsor the event and hand out free drinks and gift cards, and Mister Softee will be there, too.
Since sports are a big part of Jeremy and Miles’ lives — they’re currently honorary captains of the DHS football team and attend practices and games — a soccer tournament will take place after the walk through DHS Unified Sports, which enables student-athletes with disabilities and peers to participate on the same team for sports training.
This isn’t the first fundraiser the Thurlows have organized for the Clarks.
In elementary school about 10 years ago, the Thurlows helped raise money to get Jeremy and Miles a service dog – a golden retriever named Valerii who is turning 11 this year.
“She does a lot for the family,” Ryan explained. “She can detect when they’re about to have seizures, she can look after them while their mom is working, so it’s been really awesome to have such a great dog for such great people, which has really helped the two twins, but Mrs. Clark as well.”
Ryan spoke about the strength of Lindsey Clark.
“Mrs. Clark is the most positive woman we’ve ever met. She battles through everything with the best mindset we’ve ever seen, and we don’t know how she stays so positive. She’s a woman with great character and we look up to her very much because of it,” Ryan said.
In a recent announcement about the upcoming fundraising event, Clark said her family’s journey with Dravet syndrome has evolved as Jeremy and Miles have gotten older.
“Dravet syndrome impacts every aspect of their lives, as well as the overall well-being of our family. We have learned to navigate these challenges and our greatest hope lies in the development of better treatments, with the ultimate hope for a cure,” she said.
“We are so thankful for the Dravet Syndrome Foundation, our family, our friends, our community and for events like this that not only help educate about this brutal condition, but to raise critical funds that get us one step closer to a cure.”
Misty Ried, campaign director for the Dravet Syndrome Foundation, said in a statement that the fight against the disease takes teamwork.
“None of us can do this alone and to achieve great things we must work together,” she said.
As of Friday afternoon, the Thurlows raised nearly $10,000. They set an initial goal of $15,000, and are poised to surpass that by a large number after Sunday’s walk.
Ryan thanked the community for rallying together.
“Really we want to thank the community for everything they’ve done,” Ryan said. “They’ve really embraced this family like we have and everyone is really adamant about coming to this walk and embracing such a special family.”
Upwards of 400 people are expected to attend Sunday, Ryan noted.
Chris reflected on his relationship with the Clarks and how special it’s been.
“It’s an amazing feeling to have these boys who are so special kind of look up to you and look at you as a friend,” he said. “It’s something we really take pride in that these two special boys are letting us come into their lives and we really appreciate them.”