XLID98 (X-linked intellectual developmental disorder 98) is an ultra-rare neurodevelopmental condition that encompasses Intellectual Disability, Epilepsy, and Autism, along with a spectrum of additional features.
Families whose child receive a diagnosis of XLID98, as Sidney did, often feel conflicting emotions: I finally know what THIS is that is affecting my child! (relief), and then, but what is THIS affecting my child? I have never heard of it before, and don't know where to start looking (worry).
I was lucky enough to be connected to a grassroots FaceBook group, where about 80 other individuals who had also received the same diagnosis as we had were already connected. Suddenly, I went from being alone on an island, to being part of a community of people who knew EXACTLY what it was like to go through what my family had. Today, we have more than 265 members in our Facebook group, comprised of families from around the world!
When I joined this group, I was told we had three Canadian families diagnosed. I was lucky enough to travel to Toronto for work, and got to meet one of the other moms. It was really an emotional experience - from feeling isolated, alone, and having no one to truly support and understand your journey, to all of a sudden be sitting across from another live person sharing their experiences, and thinking to yourself, "I am going through EXACTLY the same thing: aggression brought on for no reason, delayed motor skills, uncontrolled epilepsy". But then to be sharing the good things too: an infectous smile, a love of animals, an outgoing personality. When Johanna and I met she pressed me to help her do more - let's get together and raise some money to help Sidney and Taylor so that we can improve their quality of life.
Fast forward about 5 years, and Johanna and I, along with 3 others, have officially banded together and created a Foundation, registered in Canada to help fund research to cure XLID98. I am excited about the possibilities that lie ahead, as well as how families could receive their diagnosis in the future - knowing there is a community of support that exists for their journey, and that they are not alone.
Help us make a meaningful impact in the lives of families affected by XLID98. Your generous donation will play a pivotal role in our efforts to find a cure for XLID98. Your support will be directed towards critical initiatives, such as the development of a central database to collect information on symptom and treatment information, as well as specialized research equipment to advance understanding of how to treat XLID98.
FOR THIS CAMPAIGN, A GENEROUS DONOR HAS AGREED TO MATCH THE FIRST $2,500 OF CONTRIBUTIONS, DOUBLING YOUR IMPACT!