CALEB NICKERSON
BRYSON Oct. 25, 2020
On Sunday afternoon, a group of citizens gathered in Bryson for a charity walk in support of one of their neighbours.
Zoé Burnett is a local girl with Rett syndrome, a rare condition that results in the loss of spoken language and distinctive hand usage, for which there is currently no cure.
Zoé’s mother Keri Richard explained that her now-eight year-old was diagnosed . . .
back in 2014 at the Children’s Hospital of Eastern Ontario (CHEO), which happens to house one of the few clinics in the province that specialize in the condition.
“We just happened to be at the neurology department at CHEO, where they actually diagnose Rett syndrome,” she said. “Her hand wringing was the number one sign … but she also speaks with her hands and her heart, so she is unable to verbally speak, but cognitively, she’s just like a regular eight year-old and goes to Grade 3 at [Dr. S.E.] McDowell [Elementary School] and is in a regular classroom.”
October is Rett Awareness month, and while Zoé and her family typically attend the annual Run 4 Rett events in September, which went virtual this year due to public health guidelines. Richard also got involved in the Ontario Rett Syndrome Association, which she has volunteered on the board of for the past three years.
“This year with COVID, it’s all done virtually, so we decided to do it this weekend to accommodate most people,” Richard said. “So that’s why we really do feel important to raise funds towards the association, it helps with the clinics, our clinic at CHEO, as well as research and helping other families learn and helping them when … those living with Rett syndrome are diagnosed. It is really important to our family and the support is really amazing. To date, we’ve raised up to $15,000 over four years and with this year we’ll be just over $18,000. It’s pretty awesome, we’re really [appreciative] of everything.”
Richard said she was pleased with the turnout of friends and family, as well as support from local restaurant Suzie’s Diner.
“It’s mostly our closer circle here, which is great,” she said. “A lot of people just get mesmerized by her, and just can’t wait to get to know her and hang out with her, because she’s pretty fun.”
The group walked a short loop through the downtown of Bryson, escorted by a truck and a few members of the local fire department. After crossing the finish line marked with chalk in the pavement, Zoé’s father Darcy Burnett thanked the attendees for their support.
“It means a lot, thank you for everyone that’s supporting us, our family, the fire department for coming out, it means an awful lot, usually we go down to Toronto every year and we do this Run 4 Rett …” he said. “This would not be possible without all the help from friends and family.”
The goal for this year’s event was $1,500, though as of Monday it had been surpassed and stood at nearly $2,500.
Donations to Zoé’s campaign can be made here until Oct. 31: https://tinyurl.com/yy7cxfbq
