Hanna Carlson, 8, right, runs through her backyard while playing with her brother Asa, 6, at their Gardiner home. Hanna has hypermobilty syndrome, which means she has to expend extra energy to keep her body moving in the proper ways. Gregory Rec/Staff Photographer
Hanna Carlson loves to draw – on paper, or “traditionally” as she calls it, and on her tablet.
Her mother, Meaghan Carlson, said she is always working away on something new.
“There’s probably like a thousand pieces of art in that (tablet),” Hanna said.
The 8-year-old girl from Gardiner loves nature, science and magic. Like many kids her age, she is curious, thoughtful and bubbly.
Hanna also deals with chronic pain and joint pain, headaches and fatigue caused by hypermobility syndrome.
It’s a spectrum disorder, which means the severity of each person’s condition varies, that affects ligaments and joints and requires extra energy trying to keep her body moving properly.
Hanna Carlson, 8, is held by her father, Ken, during a portrait along with her mother, Meaghan, and brother, Asa, 6 at their Gardiner home. Gregory Rec/Staff Photographer
Hanna’s mother organized a virtual walk in Gardiner in 2021 to raise money for the Boston Children’s Hospital, where Hannah is a patient.
In the years since, her condition hasn’t changed much. But the family is now trying to determine if she has Ehlers-Danlos syndrome, a group of disorders that can affect skin, joints and blood vessel walls.
Hypermobility syndrome and Ehlers-Danlos are closely related, but Hanna still needs more testing to determine her exact diagnosis, her mother said.
As Hanna goes through growth spurts, they exacerbate her symptoms, her mother said.
“If you catch Hanna on a good day, absolutely you’re (going to think) ‘OK, normal kid,’ but day to day it’s absolutely something chronic that she’s living with all the time,” Carlson said.
She was diagnosed after Carlson noticed Hanna was having trouble sitting upright. After seeking a diagnosis in Maine, Carlson and her husband brought Hanna, then 4, for a second opinion at Boston Children’s Hospital where she has now been participating in a congenital myopathy research study for about three years.
FAMILY ADVOCACY
In late June, the Carlsons participated in the annual Family Advocacy Day in Washington, D.C., a lobbying event to remind lawmakers of the unique role of children’s hospitals and who benefits when they’re supported, Amy DeLong, a spokesperson for Boston Children’s said.
The Carlsons were one of five families the hospital brought to the Capitol this year.
“Having the patients come tell their own stories is so much more impactful and real” than having hospital staff do it, DeLong said.
“We were there to advocate and share our story,” Meaghan Carlson said.
Hanna and her family met with all four members of Maine’s Congressional delegation. She and Sen. Susan Collins were wearing matching jewelry.
“I was wearing a pearl necklace, pearl earrings. She was wearing a pearl necklace and real pearl earrings. Mine were stick-on,” Hanna said.
Hanna Carlson, 8, shows Sen. Susan Collins her pearl necklace during a recent trip to Washington, D.C. for Family Advocacy Day. Courtesy Boston Children’s Hospital
Meeting Hanna was “truly inspiring,” Collins said in a statement to the Press Herald. “Despite battling health challenges her whole life, Hanna had a tremendous attitude and outlook, both for her medical care and everyday life as a rising third-grader.”
Sen. Angus King’s office arranged for Hanna to use a wheelchair so she could navigate Capitol Hill’s expansive wings and stairways. Hanna’s mother said it was “invaluable because she would have never, ever been able to make it” if she had to walk.
‘STAY MOVING’
There is no cure for Hanna’s genetic condition, but its symptoms can be treated by strengthening muscles and taking medication, according to the Cleveland Clinic.
She regularly receives occupational, physical and speech therapy.
“We try to stay moving, which is really the only thing we have right now,” Carlson said. “Maintenance therapy, physical therapy, try and keep her muscles strong to keep her joints protected and her stamina up.
Because Hanna is enrolled in the research study in Boston, experts can alert her family if new information is discovered in her DNA that could provide information about her condition.
Carlson said that is “one huge benefit of being at a research hospital like Boston.”
Hanna Carlson, 8, searches for strawberries to pick at her Gardiner home. She loves learning about science and watching reptile videos. Gregory Rec/Staff Photographer
A soon-to-be third-grader at River View Community School in South Gardiner, Hanna has an Individualized Educational Plan, known as an IEP, to help direct her learning and make things easier in school. The IEP has been helping, her mother said.
Hanna’s condition causes her to miss a lot of school days, but even when she’s home Hanna enjoys learning by watching science and reptile videos.
When she returns to school in the fall, she hopes to join the robotics club and build a tiny, robotic hedgehog.
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