Our Story

Brandon was born healthy and happy in 2014. We didn’t suspect anything was different about his development until his head circumference grew rapidly. We enrolled him into therapies at 7 months of age but did not receive the SKS diagnosis until March 2019.

On January 18, 2021, Brandon was found unresponsive and has remained in the hospital ever since battling his way back to us. We started this non-profit to take control over some of the uncontrollable and to accelerate research for this devastating disease and the potentially life-threatening complications.