Five-year-old Sophia is this year’s ambassador for the annual Comox Valley Child Development Association Children’s Telethon Nov. 6.
The association has been helping Sophia since the day she was born. She receives services through The Autism Program (TAP) but began her time in the Infant Development Program. Within weeks of Sophia’s birth, the family had visits from an infant development consultant, a speech and language pathologist, an occupational therapist and a physical therapist. They continue to receive support.
“The support that we have received from the CVCDA has been a tremendous resource for us,” her mother Natasha said. “It was very overwhelming looking at all of the extra needs that came with Sophia’s diagnosis of Trisomy 21 (Down syndrome) and having all of our therapists in one location was one less thing to worry about.”
She credits infant development consultant Jennifer McInnis for helping in the early years via home visits, providing infant massage, and arranging a variety of community and Island-wide resources such as YANA (You Are Not Alone) and Bear Essentials. McInnis was also there to speak with, and “ease our concerns as new parents,” Natasha said.
In time, the family started attending the centre for Sophia’s therapy sessions.
“Sophia loves her visits to the centre, and usually runs straight to the door of the therapy building and eagerly knocks at the door to be let in,” Natasha said.
A recent diagnosis of ASD (Autism Spectrum Disorder) enables access to TAP sessions, which Sophia enjoys. Although it comes with work, Natasha said she always greets staff with a wave, a smile and even the occasional hug.
“Sophia and her family are dear to the CVCDA and we are so thrilled they have agreed to be our ambassador family for the agency’s 47th annual Children’s Telethon,” executive director Cindy Xavier said. “Like many children, Sophia had significant needs in her first months, and continues to need support as she grows and develops into a delightful and thriving young individual. We have been honoured to share this journey with her. Our agency is fortunate to have passionate and talented team members who go above and beyond for the families they serve. They are truly among the unsung heroes of this community.”
Natasha finds it unacceptable that there is no funding provided for children and adults with Trisomy 21. She and two other parents founded the Vancouver Island Down syndrome Society to offer supports to families in the mid to northern regions of Vancouver Island. Another organization, Down Syndrome BC, advocates tirelessly for funding for people diagnosed with Trisomy 21.
“Because there are no government supports in place for people with Down syndrome as there is for people with ASD, the CVCDA has played an integral part in being able to access therapy for Sophia,” she said.
This year’s telethon is fundraising towards a goal of replacing the Early Intervention Therapy Building.
“It is becoming impossible to keep up with the age and maintenance of the building, and it is drastically lacking in space for our professionals to meet the growing needs of our community’s families,” Xavier said.