Orangeville Boy Lives Life to the Fullest with Rare Disease

What would you do if your child was born with a rare neurological disease? So was the case for a small town boy. In Orangeville, Ontario, Ryder Ouderkirk lives with Pitt-Hopkins Syndrome (PTHS) and he refuses to let that stop him from living a fulfilling life.

What is Pitt Hopkins Syndrome?

This very rare genetic disorder combats a specific gene in the chromosomes that causes developmental delay, breathing issues, epilepsy, speech issues and unique facial features. For a 7 year old boy like Ryder, it poses difficult challenges. The syndrome is so rare that only 600 people in North America suffer from it and Rider is among the few.

His proud father Jay, says that Ryder is indeed “one in a million.” He is the first Canadian resident to receive Health Canada’s green light for care at the Pitt Hopkins Clinic in Boston, MA.

The main issues with Ryder’s condition revolve around his non-verbal communication. He has trouble dictating to Jay when something is wrong. When Ryder was stung by a bee, it wasn’t until Jay found the bee sting hours later that he realized why he was crying all night in bed. Ryder doesn’t have the comprehension to point. If he has pain, Jay has to start from his toes and work his way up to his head to pinpoint the discomfort.

“I’m a dad that may never hear the word dad and that’s just fine. He says it in so many other ways. I’ve just had to learn his language.”

September 18th is now officially Pitt-Hopkins Awareness Day at Orangeville, in honor of Ryder. The town is slowly becoming more and more aware of this rare disease and Jay is making sure of that firsthand.

Despite his hardships, Jay recognizes the silver linings and keeps his spirits optimistic. He views Rider’s condition as a blessing as it has linked him up with the “kindest souls on the planet.”

As for Ryder, he is making the best out of his difficult situation and living life to the fullest. He’s an active little wunderkind who loves to ski, snowshoe and he’s even taken on former NHL players Paul Coffey and Curtis Joseph on the ice. Living in Canada has given him the opportunity to relish in winter sports with a smile on his face.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email