Hanna Carlson loves to draw â on paper, or âtraditionallyâ as she calls it, and on her tablet.
Her mother, Meaghan Carlson, said she is always working away on something new.
âThereâs probably like a thousand pieces of art in that (tablet),â 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.
Itâs a spectrum disorder, which means the severity of each personâs condition varies, that affects ligaments and joints and requires extra energy trying to keep her body moving properly.
Hannaâs mother organized a virtual walk in Gardiner in 2021 to raise money for the Boston Childrenâs Hospital, where Hannah is a patient.
In the years since, her condition hasnât 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.
âIf you catch Hanna on a good day, absolutely youâre (going to think) âOK, normal kid,â but day to day itâs absolutely something chronic that sheâs living with all the time,â 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 Childrenâs 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 childrenâs hospitals and who benefits when theyâre supported, Amy DeLong, a spokesperson for Boston Childrenâs said.
The Carlsons were one of five families the hospital brought to the Capitol this year.
âHaving the patients come tell their own stories is so much more impactful and realâ than having hospital staff do it, DeLong said.
âWe were there to advocate and share our story,â Meaghan Carlson said.
Hanna and her family met with all four members of Maineâs Congressional delegation. She and Sen. Susan Collins were wearing matching jewelry.
âI was wearing a pearl necklace, pearl earrings. She was wearing a pearl necklace and real pearl earrings. Mine were stick-on,â Hanna said.
Meeting Hanna was âtruly inspiring,â Collins said in a statement to the Press Herald. âDespite 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.â
Sen. Angus Kingâs office arranged for Hanna to use a wheelchair so she could navigate Capitol Hillâs expansive wings and stairways. Hannaâs mother said it was âinvaluable because she would have never, ever been able to make itâ if she had to walk.
âSTAY MOVINGâ
There is no cure for Hannaâs 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.
âWe try to stay moving, which is really the only thing we have right now,â Carlson said. âMaintenance 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 âone huge benefit of being at a research hospital like Boston.â
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.
Hannaâs condition causes her to miss a lot of school days, but even when sheâs 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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