Meaghan Carlson, flanked Thursday by her son Asa, 4, and daughter Hanna, 6, are taking part in Sunday’s virtual Eversource Walk for Kids, which raises money for research at Boston Children’s Hospital. Hanna is enrolled in a research study at the hospital to determine the best prognosis and plan for treatment of her neuromuscular condition. Jessica Lowell/Kennebec Journal

GARDINER— Meaghan Carlson has a pragmatic philosophy about fundraising.

“If we each do a little bit, all together we can do a lot,” Carlson said Thursday, sitting in the shade of an umbrella in her yard, while two of her children played nearby.

That’s what has propelled her to organize a virtual walk from 9:30-11:30 a.m. around the Gardiner Common on Sunday on behalf of the Eversource Walk for Kids, a fundraiser for the Boston Children’s Hospital Trust. The trust raises money for research at Boston Children’s Hospital, where her daughter Hanna, 6, is part of a neuromuscular research lab study at the hospital’s Beggs Lab.

Carlson noticed something was different about her baby, who was having trouble staying upright among other things. After seeking a diagnosis in Maine, she and her husband brought Hanna, then 4, for a second opinion at Boston Children’s Hospital.

Hanna’s suspected diagnosis, she said, is hypermobility syndrome that affects ligaments and joints. It’s a spectrum disorder, which means the severity of each person’s condition varies. People who have this diagnosis expend extra energy trying to keep their body moving in the proper ways, which can result in fatigue and pain.

“Originally, it was just difficult to see my kiddo not hitting her milestones and working harder to catch up to her peers,” Carlson said. “This has progressed to where I am heartbroken to witness her in discomfort and pain, seeing her too tired to be an active and happy 6-year-old. It can be really hard when people see her and assume everything is normal, but as her mom I see her having a really hard time some days.”

Through her participation in the Beggs Lab study, Hanna can help with the diagnosis and treatment of children with conditions that create communication problems between muscles and nerves.

“We don’t understand why she had it or what the root cause of it is,” Carlson said. “It could potentially be Ehlers-Danlos Syndrome, which is still considered a rare disease. There are all these different variants of it and it needs so much more research.”

For Carlson, the need for research ignited the idea to raise money through the virtual walk in an intentional way this year.

A year ago, she learned of the virtual walk late and was able to raise about $1,500. This year, Team Hanna’s Red Clovers is on track to raise more than $10,500, which for Carlson is deeply gratifying.

Hanna, the focus for the fundraising effort, isn’t yet aware of how much money that is. But she has fixed ideas about other things. She insists the reason her legs do not work like most people’s do is because she is a “Sea Flower Mermaid.”

Hanna enjoys school, especially science — exploring nature, playing with magnet blocks — but also dressing up, drawing, imaginative play, and fashion design as well as playing with sister Freya and brother Asa and best friends.

On Thursday, the rough and tumble play of Hanna and Asa, 4, had Carlson gently suggesting that Asa not walk all over Hanna, who was lying in the grass.

Hanna continues physical, occupational and speech therapy in Gardiner and makes the trip to Boston Children’s Hospital to keep finding answers. While they’re grateful they can travel to and from one of the world’s best children’s hospitals in a day, they sometimes plan an overnight stay to make the trip less tiring.

Carlson describes Hanna as a curious dreamer with big ideas. She’s known for her “jokes and has an insight for every situation, and can come up with creative solutions for all kinds of problems.”

That’s reflected in the name of the Carlsons’ fundraising group. Hanna’s Red Clovers takes its name from a story she’s been told about her mother and sister picking red clover flowers in the meadows near their home to make herbal teas before Hanna was born. Hanna loved the story and determined she had been a flower before being human. For Hanna, this explains her passion for animals and plants.

Fundraising for the team, which includes members from across the country and New Zealand, started with contributions of $5 and $10 and it has added up and is being designated for pediatrics research. That money can pay for 3D-printing an infant’s spine or brain to help the surgeons in their work.

“When you think about it, it’s so much more to that family and that kid,” she said.

Hanna has also partnered with Team Toyota, which has also raised about $10,000.

“I want to find an answer for Hanna, because we don’t have a treatment,” Carlson said, wearing her Hanna’s Red Clovers T-shirt. “She does maintenance therapies to get her through the day-to-day, but we don’t know — we have no prognosis. Is this something progressive? Is it something static? Is she going to need a different approach to therapy?”

Even with a probable diagnosis of Ehlers-Danlos Syndrome, she said, Hanna is still on the same path that she’s been following. Carlson keeps a log of symptoms that come up and what’s happening around that time to perhaps pinpoint what triggers them.

“That’s all we can do. That’s all we have,” she said. “I can walk. I can raise money, I can bring awareness, I can build a really strong community around us, which we definitely have. My kids feel seen and supported and I feel like I can help in this way.”


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