Life with Trisomy 9 Mosaic: Carolyn's Story
Published March 9, 2020
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…
Life with Trisomy 21: Ally's Story
Published March 6, 2020
By Margaret, Ally's Mom As we approach World Down Syndrome Day on March 21st, we were asked to share a little about our daughter Alison (Ally). There is so much to write about, but I think our focus should be about how such a small little girl has m…
Living Life to the Fullest with a Feeding Tube
Published Feb. 14, 2020
“I have spinal muscular atrophy type two,” Cory shares. “Because of my condition, I’ve had to learn to adapt to every type of normal situation, including eating.” Spinal muscular atrophy is a genetic condition that causes progressive muscle weakness…
The Beauty of Melia's Feeding Tube
Published Feb. 7, 2020
“There are different ways to feed your baby, and they are all beautiful,” Heather says. “I hope more people learn that during Feeding Tube Awareness Week.” When her daughter Melia Grace was born last summer, Heather wasn’t familiar with all the dif…
Home for the Holidays: Xavier
Published Jan. 10, 2020
Our patient Xavier was born in December of 2018 with multiple challenging diagnoses. During the first year of his life, Xavier overcame many obstacles, including pneumonia, intrapulmonary hemorrhage, infections, and almost every diagnostic test and …
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