Our son, Jackson, was diagnosed with Fragile X Syndrome when he was 22 months. Fragile X Syndrome is the most common inherited cause of autism and intellectual disabilities worldwide. Jackson has been receiving therapies since that diagnosis, which entailed 8 hours a week through First Steps/Blue Stars Therapy and recently moved into the public school system and is receiving 520 minutes of therapy a week in an integrated school program, meaning he is surrounded by typical developing and special needs kiddos.
In the US, there are 1.5 million carriers of Fragile X, like Jackson's mommy and 100,000 individuals with the full mutation of Fragile X Syndrome. Here in Missouri there are 30,000 carriers and 2,000 individuals with the full mutation.
Some of the struggles Jackson faces are:
* Speech delays, more specifically with expressive language
* Sensory Integration - sensitivity to loud noises, crowds
* Self Harm/Aggression - when Jackson is overwhelmed he doesn't know how to cope, so he will bang his head on a wall or the ground to try and release his emotions.
FRAXA is an amazing organization that has and will continue to support our family and many others through funding research efforts, covering travel expenses for medical visits, etc.
Please consider donating to this wonderful cause and supporting people like Jackson!
Interested in learning more about our journey and Fragile X? Check out the link below where you can explore our blog and other Fragile X Resources.