The story of Julian
Meet Julian, an 8 YO boy who suffers from FX. He was diagnosed with FX at 13 months old. Since birth we noticed he was not meeting his milestones and decided to have him checked. It came back with a rare genetic syndrome that affects the FMR1 gene. FX affects 1 in every 4,000 boys and causes mild to severe intellectual disability. A couple other delays include talking, anxiety, and hyperactive behavior.
Since being diagnosed Julian has assisted in many types of therapies such as OT, PT, and ABA which has helped him tremendously. So many tears have been shed, so many what if ‘s and how come questions I ask myself, time after time as a parent, caregiver and advocate for my child. Educating myself in world that is now norm to us has possibly been the best thing I could of done for Julian, myself and my family.
Although there is no cure for FX, I believe researches have made great strides in figuring out the genetic cause of the neurodevelopment disorder. Underneath it all Julian is just a happy fun and energetic little boy who enjoys a lot of same things that his peers enjoy. Remember to take things “one day at a time” .