by Gabbie Nadeau | Feb 24, 2021 | Media Room, Uncategorized
The Cornelia de Lange Syndrome (CdLS) Foundation has joined forces with over 25 million Americans living with a rare disease and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to...
by Francesca Scognamiglio | Feb 12, 2021 | In Memoriam
Our beautiful Angel got to see the face of God on February 5th 2020. We were so blessed to have her 38 years! She fought a long hard battle for three weeks but God called her home. She was definitely the light and strength of our family. She adored her brother Paul...
by Francesca Scognamiglio | Feb 12, 2021 | In Memoriam
Steven was a great teacher to his doctors, therapists and teachers. His soul is old and wise. He was the center of our universe, but we didn’t realize just how very important he was to all the people in his life, from caregivers to bus aide, until after he died....
by Francesca Scognamiglio | Feb 12, 2021 | In Memoriam
Our sweet Addilyn Joelle, who we called ‘Addi Jo’, was born at 34 weeks weighing a whopping 3lbs 5oz and measured 15inches. She had the most beautiful head of dark brown hair and the most beautiful crystal blue eyes that sometimes looked green. She looked just like a...
by Francesca Scognamiglio | Feb 12, 2021 | In Memoriam
Andrew’s CdLS diagnosis upon birth had changed our lives, maybe not always in the best of ways that is true. But thru it all he worked to endure and to thrive, but also in turn taught us of patience and of acceptance. He loved us unconditionally, looking forward...
by Francesca Scognamiglio | Feb 8, 2021 | In Memoriam
Brady was a sweet and loveable 5 year old. He loved Yo Gabba,Puffs and spending time with his sister. He spent most of his life in the hospital but he was the strongest boy I’ve never known. He left this Earth on Christmas Eve 2013 but he hadn’t left our...
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