Local family sharing their Trisomy journey on Trisomy 9 Awareness Day – Boston News, Weather, Sports [Video]

(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 …