Gardiner Girl Advocates for Children’s Hospitals at Family Advocacy Day in Washington, D.C.
Eight-year-old Hanna Carlson, of Gardiner, Maine, is not your average third-grader. Despite dealing with chronic pain and joint pain caused by hypermobility syndrome, Hanna remains curious, thoughtful, and bubbly. Hanna’s condition, which affects ligaments and joints, requires her to expend extra energy to keep her body moving properly. Her mother, Meaghan Carlson, organized a virtual walk in Gardiner in 2021 to raise money for the Boston Children’s Hospital, where Hanna is a patient.
Recently, the Carlson family had the opportunity to participate in the annual Family Advocacy Day in Washington, D.C. This lobbying event serves to remind lawmakers of the unique role of children’s hospitals and who benefits from their support. The Carlsons were one of five families brought to the Capitol this year by the Boston Children’s Hospital. Hanna and her family had the chance to meet with all four members of Maine’s Congressional delegation, including Sen. Susan Collins, who Hanna was wearing matching jewelry with.
“Having the patients come tell their own stories is so much more impactful and real than having hospital staff do it,” said Amy DeLong, a spokesperson for Boston Children’s Hospital. Meeting Hanna was inspiring for everyone who encountered her, including Sen. Collins. Despite battling health challenges her whole life, Hanna has maintained a tremendous attitude and outlook, both for her medical care and everyday life as a rising third-grader, said Collins in a statement to the Press Herald.
Sen. Angus King’s office arranged for Hanna to use a wheelchair during their time in Washington, D.C. This accommodation was invaluable as it allowed Hanna to navigate Capitol Hill’s expansive wings and stairways. Hanna’s mother expressed gratitude for the assistance, noting that Hanna would have never been able to make it without the wheelchair.
While there is no cure for Hanna’s genetic condition, its symptoms can be managed through strengthening muscles and medication, according to the Cleveland Clinic. Hanna regularly receives occupational, physical, and speech therapy to maintain her strength and stamina. Being enrolled in the research study at Boston Children’s Hospital also provides Hanna’s family with the benefit of receiving new information about her condition if discovered in her DNA.
Despite missing numerous school days due to her condition, Hanna is an eager learner. She enjoys watching science and reptile videos to supplement her education while at home. When she returns to school in the fall, Hanna hopes to join the robotics club and build a tiny, robotic hedgehog. Her Individualized Educational Plan (IEP) helps direct her learning and makes things easier for her at school.
Hanna’s story serves as an inspiration to many, showing that perseverance and a positive attitude can overcome even the most challenging obstacles. The Carlson family’s advocacy efforts at Family Advocacy Day highlight the importance of supporting children’s hospitals and the impact they make on the lives of young patients like Hanna.