Founder & president
I can remember the day we received Liam’s diagnosis of ATR-X. The genetic counselor told me they didn’t really know much about it. She said we would become the experts and would probably know more about ATR-X than most doctors. She gave me a brief summary of the diagnosis and recommended I look into an ATR-X Facebook group and that was that. It is such a relief to know and be in contact with other families that are going through a similar situation, families that truly understand what it’s like to not only have a special needs child but one that has a syndrome that has limited information known about it. We came together and became great friends and family with many ATR-X families all over the world.
When Danny started having developmental delays, I was in a pretty gray place. I didn’t have anyone who understood what I was going through, and I myself didn’t understand. Receiving Danny’s diagnosis opened my world and I was given the ability to reach ahead and grab the hand of somebody who was a few steps ahead of me for support. Now I have an opportunity to reach back and grab the hand of someone who is a few steps behind and be there to encourage and support them.
With how unexpected this diagnosis is, it is nice to have others to turn to who have experienced similar paths.
We are strong because we have community with our group. Each parent and member of our group has emotional, social, medical, and educational experiences that we can draw from to learn and grow as parents and families. These perspectives have given me the ability to move forward with confidence.
As special needs parents, we don’t have the power to make life “fair,” but we do have the power to make life joyful.