A North Attleborough teen raising awareness about rare heart diseases has inspired Gov. Maura Healey to declare Feb. 7-14 as Congenital Heart Awareness Week to bring attention to these diseases.
Faith O’Hanlon, 17, is an activist for heart disease awareness due to her younger sister, Scarlett, who was born with a rare cardiac defect called Pulmonary Atresia with Intact Ventricular Septum, which made it impossible for blood from her heart to go to her lungs. Since then, Scarlett has had two surgeries, one after her birth and one in February 2020. She will need another open-heart surgery soon to replace her valves.
“She’s doing alright now,” Faith said of her sister. “She loves sports and participates in basketball, but even going up a flight of stairs can leave her exhausted and she’s still very small in height despite being 13 years old.”
Faith, along with the rest of her family, has been working to raise awareness and money for a cure for Congenital Heart Defect (CHD). Faith’s mother, Jamie, co-founded Sisters@Heart, a local non-profit organization founded and directed by North Attleborough residents whose mission statement is to improve the lives of those suffering from heart attacks and strokes.
Faith works alongside her mother at events hosted by Sisters@Heart and has actively spread awareness about CHDs at her school. She admitted that it is scary to have a family member with a very rare disease. Still, she said raising awareness is imperative so her sister can have a better life.
‘I think it’s a tough position to be in as a family member, as you often feel very helpless, but we’re doing all we can,” Faith said. “I’m not a doctor and can’t cure her, but this is what I can do.”
To expand her activism, Faith met with state Sen. Paul Feeney (D-Foxboro), whom she interned for last year. O’Hanlon asked Feeney if Healey would be willing to declare a week dedicated to congenital heart awareness, and in response, Feeney arranged a meeting with her and the Healey administration.
A spokesman for the Healey administration said that O’Hanlon’s efforts were inspiring and that the governor was grateful to meet with her and learn about her and her sister’s story. The meeting resulted in a proclamation from Healey declaring the week of Feb. 7-14 as Congenital Heart Awareness Week.
“Therefore, I, Maura T. Healey, Governor of the Commonwealth of Massachusetts, do hereby proclaim Feb. 7-14, 2024, to be Congenital Heart Awareness Week,” Healey wrote in the declaration. “And urge all residents of the Commonwealth to take cognizance of this event and participate fittingly in its observance.”
When Faith received the proclamation, she said she was proud of what she could accomplish. She thanked Healey and Feeney for listening to her and hoped that more people in Massachusetts would hear her sister’s story and learn more about CHDs.
“Through awareness comes advocacy. Through advocacy comes funding. Through funding comes research. Through research comes a cure,” O’Hanlon said. “This is a baseline to lead to a cure.”
