Words from a STXBP1 parent and first time runner

I decided to train for the Brisbane half marathon to raise funds for our beautiful and rare STXBP1 superheroes but also to experience what it is like to try and try and try. Our STXBP1 kids don’t get the option to “not be a runner” or take time off from training. To say “no thanks, not training today”. They have to work every single day to achieve the inch-stones you and i take for granted.

My training schedule was nowhere near perfect. Having a child with special needs catapults you into challenges out of the normal, but the vision of my daughter on her feet, a cure in the future, and contributing to change was my motivator. Especially around the 14km mark!! Even complaining about running was a privilege that my daughter is not granted with her intense therapy schedule. The day was a success, raiding nearly $20,000! These funds will contribute towards research for a cure and developing clinical trial sites in Australia.