Photo: Courtesy of Ariane McMahan
BOSTON (WBZ NewsRadio) — Keilly McMahan has Rett syndrome. It’s a rare, spontaneous genetic neurological disorder.
She was diagnosed when she was a toddler. “We noticed Keilly was missing some milestones,” her mother, Ariane McMahan, said.
Keilly is now 23 years old. She’s non-verbal and uses a Tobii DynaVox device, which uses her eye gaze to help her communicate.
Ariane said the inability to speak is one of the common characteristics of the disorder. Others include seizures, difficulty eating, and the inability to walk.
Read More: The Arc of Massachusetts: Jonathan & Esther's Story
Because of the severity of this neurological disorder, all through school Keilly had one-on-one special education support. That came to an end at age 22.
“She [goes] from being very active in her school community with peers… to just being at home,” Ariane said. “And now the parent has to figure it out because there’s no day programs available.”
The Arc of Massachusetts advocated for Keilly, and helped Ariane get funding for support help.
“[It] often feels like you’re fighting the fight by yourself,” Ariane said. “And so, to have someone like the folks at the Arc, who have the knowledge about what the law is, where the funding is coming from, how much funding is available, is hugely effective.”
The Arc of Massachusetts is celebrating its 70th year. The non-profit is dedicated to enhancing the lives of those with intellectual and developmental disabilities. Click here to learn how to donate.
WBZ NewsRadio's Shari Small (@ShariSmallNews) reports:
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