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Category: Pediatric Patient Stories

Life with Trisomy 21: Isaac's Story
Published March 31, 2020
Today, we’d like to introduce you to Isaac, who lives with Trisomy 21, also known as Down syndrome. Isaac turned three on World Down Syndrome Day. While he didn’t get to have a big party this year because of the COVID-19 situation, Isaac’s family st…
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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…
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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…
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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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Home for the Holidays: Saylor
Published Dec. 13, 2019
Our patient Saylor is a precious little girl with lots of personality. She loves to play and laugh - especially with her very special nurse, Vadim. Saylor and Vadim are the best of friends and love doing anything and everything together. During a re…
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