Guelph, Ont. family calls for more support as son with rare speech disorder faces costly therapy

CTV’s Spencer Turcotte speaks to a mother who is trying to help her son, and all people like him, find their voice.

A Guelph, Ont., mother says she’s facing a growing financial burden as she tries to help her young son find his voice.

Four-year-old Jayce Goldberg has childhood apraxia of speech, a rare neurological condition that makes it difficult to coordinate the movements needed to speak. Much of the therapy he requires is not covered by provincial health care, leaving the family to pay out of pocket.

Jayce is described as a curious and energetic child, but communicating isn’t easy.

“The brain knows what it wants to say, but it has trouble communicating to the mouth, the jaw, the tongue,” said his mother, Elaine Goldberg.

She said there were early signs something wasn’t right.

“I noticed he just wouldn’t babble. He just wouldn’t make noises or sounds or anything,” Goldberg said.

Jayce was diagnosed at the age of three. While he understands what’s happening around him, he struggles to respond, often relying on gestures and a limited number of words.

He has been receiving speech therapy through KidsAbility, which is covered by OHIP, but that support is expected to end once he enters junior kindergarten.

“When they hit junior kindergarten in most regions, they have to stop those services as they become part of the education system in Ontario,” said Brooke Rea, a speech-language pathologist who has been working with Jayce for more than a year.

Private therapy is available, but it comes at a cost. The Goldberg’s pay around $100 per session several times a week at the Childhood Apraxia & Speech Therapy Centre.

“If you were learning how to serve a tennis ball and you only practice once a week for 10 minutes, you can imagine it would take you a really long time to feel comfortable doing that,” Rea, who operates the centre, said. “Speech is kind of the same thing for him.”

Despite the challenges, Jayce has made significant progress in recent months, recently beginning to say words like “up,” “go” and “mama.”

“The fact that I never heard ‘mama’ until about six months ago … it’s the best thing in the world,” his mother said.

Still, the cost of continued therapy is weighing heavily on the family, who are also raising three other children.

“It’s sometimes scary to even think how we are going to afford everything,” Goldberg said.

The family is now sharing their story in hopes of raising awareness about childhood apraxia of speech and encouraging the province to reconsider how long families are eligible for financial support.

CTV News reached out to Ontario’s Ministry of Health for comment but did not receive a response in time for publication.

To help cover ongoing therapy costs, the family recently held a fundraiser on April 18, raising about $15,000. While helpful, it’s only a temporary solution.

Goldberg remains determined to ensure her son continues to make progress so that one day, he can speak up for himself too.