The 52nd annual Easter Seals Telethon returns to the airwaves in Peterborough, Ont., this Sunday.
The long-standing event raises money to support children in the community living with physical disabilities and at least one Peterborough area seven-year-old is getting ready for the big day.
Sawyer Growden is this year’s Easter Seals Ambassador.
“She is a handful in the best way. She is just so strong, so happy. You have the best sense of humour,” said Sawyer’s mom, Tara Growden.
“And you just bring sparkle and light to everyone that you meet. It is just hard not to fall in love with this face.”
Sawyer has Angelman Syndrome. A disorder that affects about one in 15,000 people from birth. A deletion in her 15th chromosome means her brain is unable to produce a protein it needs for movement, speech and other development.
Sawyer is non-verbal and needs support for daily tasks, but her mother said it hasn’t stopped her from reaching her goals.
“We call them inch stones instead of milestones,” she said.
“Every little thing that she does we celebrate, and it is such a huge deal because she works so hard, and she is stubborn, and she just doesn’t give up.”
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“We were really worried a few years ago before she started school,” added her Father, Dan Growden.
“School has really opened her up. She is a ham for the camera now, she loves people paying attention to her. It’s been good.”
And the family got to experience something new this year too: a trip to the fully accessible Easter Seals Camp Merrywood, near Perth, Ont.
“We never thought we would go to a place where she could go sailing, swimming, archery, wheelchair basketball — anything you can think of, they have there,” Growden said.
“It allowed us to enjoy things that typically developing kids would be able to enjoy without having to worry about it.”
Sawyer’s older brother Teddy also attended, his parents adding that it allowed him to meet other people who had siblings with different needs.
“When you meet the other families there, they just get it, they understand,” Growden said.
Now the family is looking forward to the future, hosting fundraising events locally, doing ambassador work with Easter Seals and fundraising through FAST, the Foundation for Angelman Syndrome Therapeutics.
“There are a number of therapeutics in the clinical stage right now to help with symptoms and maybe eventually we will find a cure,” Growden said.
Until then they are celebrating those “inch stones” along the way.
“The future is looking bright, and we really couldn’t do it without the support of this community.”
If you are interested in learning more or donating to Easter Seals, you can visit the Peterborough Easter Seals website. Or you can tune into Global Peterborough or YourTV on Sunday, March 24, from 10 a.m. to 4 p.m. for the annual telethon.
Money raised provides local families with funding for day-to-day needs, accessibility support and resources and sending kids to camp.