At 16-years-old, Agassiz resident Destiny Page-Thom is like a lot of other teenagers. She loves music, shopping, sports, and super heroes like The Avengers.
“She’s a typical 16-year-old with a lot of barriers,” said her mom, Tanya Page.
While some teenagers dream about getting their license or moving for college, Destiny dreams of playing ball. And thanks to Variety –the Children’s Charity of B.C., she got to do exactly that.
Destiny has Rett Syndrome, a rare genetic neurological and developmental disorder that impacts the brain as it develops –causing a progressive inability to use muscles for speech and body movements.
She’s fully dependent and along with Rett Syndrome, has chronic pain, seizures and a breathing condition that requires round-the-clock nursing care –someone has to be up to monitor her every night.
Page has nursing help, but taking care of Destiny is a full-time job.
“My daughter’s my life. I love her and I would never change anything about it,” she said. “I would love to be working right now, but how do you try and do everything?”
That’s where Variety has stepped in –providing support and opportunities that might not otherwise exist.
Variety “steps in where health care ends,” connecting special needs kids in B.C. and the Yukon with services and financial support. And in Destiny’s case, a once-in-a-lifetime moment.
Although she lost the ability to walk and speak as a child, Destiny still has some hand use, allowing her to play catch with a baseball– one of her favorite sports. In 2012, Variety set up the opportunity for Destiny to throw the first pitch at a Vancouver Canadians game.
“She was so proud,” recalled Page. “A lot of people look at somebody in a wheelchair and see what they can’t do instead of what they can do.”
“I think it amazed people.”
And that wasn’t the only time Variety stepped in to lend a hand to the courageous mother-daughter duo. Last year Page’s vehicle broke down –making it impossible to get Destiny to her medical appointments in Vancouver and Surrey.
“We were stranded quite a few times and Variety gave us a van…that helps her get to the appointments and what not,” said Page. “Variety has helped us so many times throughout the years. They’ve helped with Destiny’s horseback riding therapy and physical therapy and doctors appointments and braces…”
According to Page, horse therapy allowed Destiny to, for a brief period of time, move independently.
“Because of horse therapy, she learned how to bum scoot,” recalled Page. “She got to the point where she could sit up on her own, [she] developed the core muscles.”
Sadly, because Rett Syndrome is a progressive disorder, Destiny has lost that now.
“But without Variety she wouldn’t have even had that ability,” said Page.
Local Harrison celebrity Todd Richard has been involved with Variety for a number of years. His song, “Follow Your Heart” is the unofficial theme song for the charity –100 per cent of profits from downloads go back to the kids.
“It’s for the best cause ever,” he said. “It helps kids actually live a normal life –kids and families that would be lost without Variety’s help.”
This Sunday, Richard will be a celebrity phone panelist during “Show of Hearts:” an eight-hour telethon program raising money for Variety. Last year he opened the show with a “Follow Your Heart” performance.
Destiny is a Variety Ambassador –part of a team of kids, youth and adults raising money for the charity. For the last eight years, she’s been raising money and awareness any way she can, holding hot dog sales and coin drives to give back to Variety.
“If we can give back, other people can give too,” said Page. “[Variety] is such a good organization and they help so many families with these kids.”
Tune into Global B.C. on Feb. 11 from 9:30 a.m.-5:30 p.m for the “Show of Hearts.” Viewers will be able to watch a livestream at Globalnews.ca and make donations by calling toll-free at 310-KIDS, online at variety.bc.ca or by texting KIDS to 42678 to make an automatic contribution.