At a few months of age, Karen and Ray Mott noticed there may be some developmental delays in their son Shane.

At one year-four months, they would learn Shane’s official diagnosis of a rare de novo genetic mutation, IQSEC2, that causes intellectual disabilities and Lennox-Gastaut syndrome (LGS), a rare and severe kind of epilepsy that starts in childhood and causes seizures. And so, their journey to advocate for Shane began. Today, Shane is a bright-eyed, handsome boy who loves classical music and attends the Abilities First School where he receives one-to-one PT, OT, and feeding therapies.

Shane is non-verbal and he requires physical support and an aide during the day as well as during his bus ride from Cornwall to Lagrange. He works hard and is making progress in therapies and activities this year.

“Shane is getting the best resources possible to lead the best life that he will have,” Karen said.

The Mott’s are most grateful for the critical resources and services available at the Abilities First School for Shane, his teachers for extending themselves to learning new therapies to meet his individual needs, and the community for their generous support to make resources like the Abilities First School available for children and their families who so desperately need them.