(WHDH) — Saturday was Trisomy 9 Awareness Day, which aims to highlight the rare condition that can make it very hard for children to grow. And one local family is sharing the story of Grace, who has defied the odds.
Only a few hundred people in the world are alive with Grace Darrah’s specific kind of Trisomy: Trisomy 9 Mosaic.
At the time she was born, there were only roughly 100 people who had been diagnosed.
“When Grace was born, one of the things we were told was that if she made it to her first birthday, it would be a wonderful thing,” her mother, Carole, recalled.
But Grace, who turns 12 this year, is thriving, attending the Perkins School for the Blind in Watertown and bringing joy to everyone she meets.
Grace is nonverbal, uses a feeding tube, and required a trach to breathe. She has spent a lot of time under the care of different specialists at Boston Children’s Hospital and has had undergone 17 procedures. But her parents say it isn’t the medical needs that define her, but the courage that she brings to every single one.
“How aware she is, how alive she is,” her dad, Gregory told 7NEWS. “She loves people. People gravitate to her because she’s so kind and they just feel it.”
Every year, her neighborhood in North Attleboro celebrates Trisomy Awareness Day her by putting out purple balloons.
This year, Gov. Healey signed a proclamation declaring March Trisomy Awareness Month. Carole is hoping their town also proclaims the same this upcoming year.
You can follow Grace’s journey on her Facebook page.
You can also learn more about Trisomy 9 at the Support Organization for Trisomy and Unique, Understanding Rare Chromosome and Gene Disorders.
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