My Nonprofit Reviews

My daughter was 16 when we finally got the diagnosis of okur chung neurodevelopmental syndrome also known as OCNDS. We have searched since she was 8 months old when she started having passing out spells. Then i noticed that she wasnt meeting her goals when it came to her crawling, walking, talking, it was all delayed. She ended up with leg braces to help her walk at the age of 2. She was behind everyone at school, her body wasn't developing the way a normal child should develop. We did many tests, bone scans, MRI's, CT scans, blood work, Genetic testing, this specialist, that specialist. Until we finally met with a doctor at sick kids in Toronto, Ontario. Which said he believes she might have OCNDS and that we would have to run a more deeper genetic test after 6 months of waiting we got the diagnosis. Then he told me about a Facebook group for parents with OCNDS as well as referred to Simon's research base out of Quebec which we are helping them with the reseach of OCNDS. They have all been amazing and I don't feel like I am the only one dealing with the diagnosis. We know we are the only one in Ontario Canada that has this condition but online we have a family. Niagara falls light up the falls for OCNDS last year so my family took the drive had signs walking around to spreed awareness