One of Maple Ridge’s bravest seven-year-olds will appear on Variety Show of Hearts Telethon 2020 this Sunday (Feb. 9).
Readers of The News will be familiar with Nicolas Schwuchow, who was diagnosed at a young age with Spinal Muscular Atrophy, a genetic disease which limits his ability to build and maintain muscle.
The challenges have been many for Nicolas but thanks to an incredibly supportive community and charity efforts like the Variety Show of Hearts Telethon, his life has been made a little easier.
Sunday’s show will feature Nicolas in a – where are they now – segment airing between 11 a.m. and noon.
“We want [donors] to see that their dollars stay right where they live,” said Variety spokesperson, Donnie Gordon.
“Those that call in Maple Ridge can rest assured that their money stays in Maple Ridge.”
Gordon said the show is proud to be supporting these inspirational children.
“He’s an amazing kid and we’ve helped him out and will continue to help him and other kids with the generosity of Variety donors.”
Nicolas’ mom, Petra Fellinger, provided some positive updates that will be discussed on the show.
“He’s in Grade 2 and doing really well as school,” she said, “He’s fully integrated in the classroom, which is awesome. We’re really fortunate.”
She also shared some information on the treatment Nicolas has been receiving.
“Three years ago he was started on the one-and-only Health Canada approved treatment for SMA.”
Called Spinraza, it is a drug treatment that is administered directly into the cervical spine through a lumbar puncture every four months.
While the delivery is unpleasant for the second grader, his mom said the treatment has helped quite a lot.
“He’s continuing to gain strength little-by-little, so that’s been really great,” Fellinger said, “He uses a power chair for mobility but he’s gained strength through his upper body. His neck [is stronger, and] he’s got way more use of his hands and his arms. His back is a lot stronger, so he’s able to sit independently and even his voice has gotten stronger.”
It was also three years ago, when Nicolas’ parents decided to reach out to Variety for help with a home renovation they needed to perform in order to make life a little easier for their son.
Fellinger said the family has just moved into the new home, which had been taken down to the studs and built from scratch.
“It’s a fully open plan, so [Nicolas] can go anywhere in our house,” she said.
“We have an elevator, a bigger bedroom for him, and a fully accessible shower. The only thing that’s not done yet is the pool so he can do his aqua exercises water treatment.”
The community in Maple Ridge and surrounding areas helped immensely.
“We’ve had a lot of community support both labour wise and products that have been donated,” Fellinger said.
Everything from flooring to windows to cabinetry, light fixtures, electrical and plumbing were helped out with..
“We reached out to [Variety] because we needed some support for a standing frame and they contacted us this year because they thought it would be nice to have him on the show to do a follow up and see how he’s doing.”
Fellinger and Variety see Nicolas as a community success story.
“He’s probably one of the happiest kids we know,” Nicolas’ mom said.
“One of his catch phrases is, ‘Today is the best day ever.”’