by Gabbie Nadeau | Oct 31, 2018 | In Memoriam
Natalie was a joyful and radiant child. When she was born, her doctors did not anticipate her living long. She defied this prognosis, and lived five very vibrant years with her loving family. Born to Jane and Arsalan, Natalie was the 5th of 9 children in the Nikzad...
by Gabbie Nadeau | Oct 19, 2018 | Research News
Here is an interesting article on rare disease patients and families, written by By Peter L. Saltonstall, President and CEO of National Organization for Rare Disorders (NORD) about developments around the FDA Safety and Innovation Act. Here is a short excerpt for a...
by Gabbie Nadeau | Oct 19, 2018 | Research News
Dr. Olaf Bodamer wasn’t sure what was wrong with the 3-year-old boy he recently examined at Boston Children’s Hospital, but he had a hunch. The child’s muscle tone was weak, and he had taken longer than expected to start walking and talking. He also had unusual facial...
by Gabbie Nadeau | Oct 19, 2018 | Research News
The Cerebra Centre for Neurodevelopmental Disorders is organized through the School of Psychology at the University of Birmingham. Their work focuses on difficulties experienced by children and adults who have intellectual disabilities, autism spectrum disorders and...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
Our friend Demetri was recently featured in Woman’s Day Magazine with his therapy horse, Sweet Pea. The two first met last year at an infant development center in Kansas. Demetri is deaf, nonverbal and legally blind, which are common characteristics of CdLS, but...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
Dr. Haaland is currently the President of the CdLS Foundation Board of Directors What is something about CdLS or the Foundation that people might not know, but should? Many families recognize the Foundation for one or two things, since that’s what they call the...
by Gabbie Nadeau | Oct 17, 2018 | In Memoriam
A lot of people think that it requires a distinctive or special type of family to raise a child with special needs but that’s far from the truth. In all actuality, it is that child that creates the “special” family. I know this is true because Nikki was that child for...
by Gabbie Nadeau | Oct 17, 2018 | In Memoriam
Our son Andrew, like so many other CdLS children had multiple physical and cognitive challenges to deal with in his life. As he got older, keeping him safe became a 24×7 job. Managing his life, was a time consuming, logistically complicated, and sometimes...
by Gabbie Nadeau | Oct 17, 2018 | In Memoriam
Jeremiah was a little guy so full of life and energy and charisma. He charmed everyone, leaving a lasting impression on every single person he came in contact with. When Mick and I first met Jeremiah, our lives were changed forever as we were immediately spell bound...
by Gabbie Nadeau | Oct 17, 2018 | In Memoriam
Ryan was a survivor from Day 1. He was like my little Duracell Battery. The doctor’s told us when he was born that he probably wouldn’t live to be a teenager. He survived numerous pneumonia’s, surgeries, and hospitalizations and always bounced back to his normal happy...
Recent Comments