The 2017 Comox Valley Child Development Association (CVCDA) Telethon takes place Nov. 5.
This year, the CVCDA has selected two clients as “co-poster children” for the Telethon — Cole Josephson and Presley Gabriel. The following feature introduces Cole and Presley to the community.
From shortly after her son was born, Cumberland resident Brenda Lenahan noticed he was a bit different.
While she describes him as a “super happy little guy,” Lenahan’s son Cole always seemed physically weak as a baby. He also didn’t crawl at the age babies typically start to do so.
“It was obvious he was different from most kids, so we were on a hunt to find some answers,” said Lenahan.
Then, about a year and a half ago, doctors at the CAUSES Research Clinic at the BC Children’s Hospital finally diagnosed Cole with MCT8 deficiency — a rare neurological condition experienced by only a few hundred people worldwide.
According to the National Center for Biotechnology Information, MCT8 deficiency is characterized by “severe cognitive deficiency, infantile hypotonia, diminished muscle mass and general muscle weakness,” among other symptoms.
Now three years old, Cole still doesn’t speak and has limited physical abilities. He has a modified walker, bicycle and other gadgets that his mom can use to help him move around.
It was shortly after Lenahan moved to Cumberland last year from Tahsis that she got into contact with the CVCDA.
She said the CVCDA’s programming has been helpful since they arrived. Cole now sees a speech and language pathologist, an occupational therapist and a physiotherapist who work with him on a regular basis.
“They really helped us to acclimatize and served as a welcoming committee of sorts,” she said. “Our therapists also started doing home visits, which we had never experienced before, as we had been living in Tahsis and traveling to Campbell River for appointments.
“I think home visits are so nice when you have very young children with challenges.”
Through his regular therapy, Cole is now working on using eye gaze technology to learn how to communicate. He also recently started attending the Three Tree Early Learning Centre in Cumberland, thanks to help from the Supported Child Development program.
Lenahan said the CVCDA has helped “normalize” her situation.
“In early years, when you’re getting used to the diagnosis and having a child that is different, they’re the community that is hugely accepting of your child and helps you get through those early days of understanding this new world you’re in,” she said.
The CVCDA’s other Telethon poster child this year is Presley Gabriel, who is a member of the organization’s Autism Program.
Through The Autism Program (TAP), CVCDA behaviour consultants develop a personalized program for each student. According to the CVCDA site, “an autism interventionist leads each group with a focus on practicing activities to share with friends and learning the social skills to make and keep friendships.”
Presley, 18, was first diagnosed with autism spectrum disorder in June 2009 after struggling with her school work. Her mother Angela said she started going to the CVCDA the following month.
“Since she’s started coming [to the CVCDA], she’s been a lot calmer,” said Angela. “She’s learned a lot of social skills and coping skills.”
Angela said the biggest change since Presley’s diagnosis has been her increased confidence in handling social and public interactions.
“She’s not afraid to ask a person working somewhere for help if she needs to find out something. She can order drinks by herself — she can order what she likes at Starbucks now,” she said.
Presley, who will attend the community living program next year when she turns 19, said she has many hobbies.
“I play video games, I draw and paint,” she said, listing Yoshi’s Island and Elder Scrolls as two of the games she enjoys playing.