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Life with Trisomy 9 Mosaic: Carolyn’s Story

Soon after Carolyn was born, she received a diagnosis of Trisomy 9 Mosaic. This rare chromosomal condition is characterized by an extra ninth chromosome in some of the body’s cells. While Carolyn’s parents quickly learned the technical definition of her condition, it wasn’t as easy to learn what it would mean practically for their daughter’s life.

“After Carolyn was diagnosed, we started researching immediately,” her mom, Ansley, recalls. “The doctor warned us not to pay attention to the negative information we might find. He told us that many children with Trisomy 9 live full, happy lives.”

The medical literature Carolyn’s parents read gave them information about the challenges she would face, but it did little to prepare them for all the joy she would bring to their lives. It’s true that Carolyn has faced many serious and frightening health struggles, but she continues to overcome every obstacle she faces. She remains the sweetest, happiest baby.

“Since coming home from the hospital, Carolyn has been doing so well,” Ansley shares. “She is rolling, sitting on her own, trying food, and working on crawling. She’s even started to laugh. Hearing her laugh for the first time was so special. It’s just so much fun to have her around and to see all her progress.”

Ansley celebrates Carolyn’s beautiful life – a life that cannot be defined by her condition. She hopes that others will learn to do the same. She hopes that more people will become aware of Trisomy 9 by meeting her daughter and asking any questions they might have.

“We are always happy when people ask questions about Carolyn in a caring way. That’s how we spread awareness,” Ansley notes. “It’s always good to connect with and learn from each individual you meet with a trisomy diagnosis, because everyone is so different. Each person is unique. So never assume – just be open to asking and learning.”

This Trisomy Awareness Month, we hope you’re asking, learning, and increasing your awareness of trisomy conditions and the amazing people who live with them.