Meet Hanna: A Boston Children’s Hospital Champion
At birth, Hanna presented as a floppy baby, which was dismissed by many providers early on. When Hanna was four years old, after nearly lifelong physical therapy and consistent regressions, she was referred to a neurologist in Maine, who referred her to a geneticist, who declined to see her.
is participating in Family Advocacy Day 2023.
“This prompted my request for a second opinion from a provider at Boston Children’s,” says Meaghan, Hanna’s mother. “As soon as genetics near home failed to take her as a patient, I knew we would be seeking care out of state.”
After meeting with providers in Boston, Hanna was diagnosed with hypermobility syndrome and hypotonia. “Knowing that some of the best research is happening at Boston Children’s was an immediate relief for me,” says Meaghan. “After seeing specialists in the hospital, I felt seen, heard, validated. And my child knew that someone was listening to us.”
Hanna and her family are still hoping for more diagnosis and treatment options as she grows. She has annual check-ups with the genetics team and several neurology check-ups each year. She is also enrolled in a congenital myopathy research study at Begg’s Lab.
Her care team knows that Hanna has a genetic abnormality, but doctors don't yet know what the implications of this are. The best current treatments for Hanna’s conditions are occupational, physical and speech therapies based in Maine.
“Her endurance continues to improve with consistency of therapy, but she has missed a lot of school due to fatigue and migraines,” says Meaghan. “While we don't have all of the answers yet, we are grateful to be at Boston Children's.”
Today, Hanna is doing well, and her health is stable. She loves drawing, playing in nature and learning more about science.