by Ashley Kus | Jul 25, 2024 | Media Room, Uncategorized
By: Nick and Cindy G. Meet Zachary! He is three years old and was born with a rare syndrome called Cornelia de Lange Syndrome. Zach is an incredibly resilient kid. He consistently deals with some discomfort daily. He struggles with hearing and is non-verbal,...
by Gabbie Nadeau | Jan 18, 2024 | Media Room, Uncategorized
By Linda Hasecke On our way back to Indiana from visiting our family in Arlington, VA we decided to try to find the Red Horse Inn in Frederick, MD, and the Tea Room at Gambrill State Park. Why? Because they were the sites of the first national gatherings of CdLS...
by Gabbie Nadeau | Jan 9, 2024 | Media Room, Uncategorized
By Mariel Moody Anthony is a 2-year-old sweetheart who goes by the name Ife. Ife (Ee-Fay) means LOVE in the Yoruba language, and he lives up to his name. He was born in September of 2021 and weighed only 4.9lbs. He is tiny but mighty, with a huge personality that he...
by Gabbie Nadeau | Jan 9, 2024 | Media Room, Uncategorized
By Leslie Schilling, Mother to Aubrie Aubrie Adelaide Schilling was born on September 24, 2021. She was born with a head full of hair and was an adventurous girl from the beginning! I am her mama, Leslie, and her dad is Ryan. She adores her sister Zoey, who is 14...
by Gabbie Nadeau | Nov 3, 2023 | Media Room, Uncategorized
Joey was born full-term on April 26, 2004. He weighed 7 lbs—1 oz. We had no indication anything was going on throughout the pregnancy. We were shocked the next day when the doctors started to tell us they suspected Joey had Cornelia de Lange Syndrome — that day...
by Gabbie Nadeau | Feb 10, 2023 | Media Room, Uncategorized
Bryn was born on December 25, 2000, with tons of curly hair, a sweet upturned nose, and the funniest little cry I had ever heard. She weighed 6 lbs., 8 oz, a fairly normal weight, but she a full two pounds smaller than her big brother, so she seemed tiny to me. She...
by Gabbie Nadeau | Jan 18, 2023 | Media Room, Uncategorized
By Stanley Clark, Guest Contributor Workplace inclusivity for people with genetic and chronic conditions is a critical issue affecting millions worldwide. For example, when you’re struggling with a severe condition, it can be hard to decide whether to keep...
by Gabbie Nadeau | Dec 12, 2022 | Media Room, Uncategorized
www.themighty.com Most of us don’t like going to the doctor or getting blood drawn or being in a hospital. But can you go so far as to say you’re traumatized by it? Some of us can. Medical trauma or medical post-traumatic stress disorder is painfully...
by Gabbie Nadeau | Dec 6, 2022 | Media Room, Uncategorized
by Marin Wolf, The Dallas Morning News/TNS | www.disabilityscoop.com DALLAS — The first time Ella Jacobs met Dr. Dan Burch, she was on the verge of tears. Jacobs was afraid Burch, a clinical assistant professor at Texas A&M College of Dentistry, would tell her the...
Recent Comments