Jacob’s Story

Jacob underwent years of medical testing, procedures, and medications before being appropriately diagnosed with CTD at the age of 8. He continues to struggle with a cognitive disability, seizures, speech delays as well as challenges with his fine motor skills due to hypotonia and dystonia.

Despite his struggles, Jacob is one of the most positive individuals you will ever meet and brightens the day of everyone he encounters. Jake loves everything sports. He absolutely loves the Oilers and can name every single NHL team mascot starting with Hunter. He played minor hockey for 10 years with Sherwood Park minor hockey and now plays on the B team for Special Olympics floor hockey in Sherwood park. He also made team Edmonton for softball and will be going to the special Olympics Alberta summer games next July to compete! He’s quite gifted with sports and loves them all!!!! He also plays on the intermediate golf team for special Olympics Edmonton. He’s also a runner; he was the first special needs athlete to be on the Bev Facey high school cross country team and he’s also run many 5 and 10 kms races with his family. He also downhill skies and loves going to Marmot Basin in Jasper.

We need your help to fund more medical and research initiatives for creatine deficiencies to be better diagnosed and treated.

Your support means so much and your donation goes a long way to finding effective treatments for CTD.