Twelve-year-old Maya Webster hopes to harness the holiday spirit of caring this December to draw attention to one of the many lifelong illnesses affecting kids all over Canada.
She’s one of the leaders of this year’s Candlelight Stroll, the annual kick-off to Christmas in Niagara-on-the-Lake, that lights up Old Town and raises money for worthy charitable causes.
Maya will be casting her light on juvenile diabetes, an autoimmune disorder she’s been living with since she was two.
“I’m really excited about getting the opportunity to advocate for diabetes” and riding in one of the horse-drawn carriages that will lead the stroll, she said.
She’s planning to give her share of the money raised at the Candlelight Stroll to the Juvenile Diabetes Research Foundation, which is working on a cure for diabetes.
Maya and her mom, Christi Webster, have been working with the foundation for about six years and Maya has been a vocal advocate.
She is the subject of a feature story elsewhere in this week’s issue of The Lake Report.
Dylan Dietsch, 13, the second leader of this year’s stroll, has lived with cerebral palsy his whole life and uses a wheelchair.
He and his family plan to use their share of the proceeds to pay for a lift that will help Dylan get up and down the stairs in their home.
Dad Matt Dietsch said Dylan wasn’t sure yet about being in the Candlelight Stroll and the family will have to navigate a few unknowns when the day comes.
The Cerebral Palsy Canada Network, an advocacy group that helps to advance awareness of the disorder, describes it as a “non-progressive impairment of the developing central nervous system.”
“It’s a neurological disorder that affects people’s communication of brain to the body,” Matt explains.
Mom Kristen Dietsch said there’s lots of room for improvement for those who have cerebral palsy, unlike some lifelong illnesses that tend to worsen with time.
Matt agrees, saying many mobility issues caused by cerebral palsy can be repaired with surgeries and speech impediments can be treated with speech therapy.
Dylan has had tendon-lengthening surgery on his right arm to help the muscles relax.
“His hand used to sit basically as far back down as you could touch your wrist,” Matt said.
Cerebral palsy exists on a wide spectrum, he added, and Dylan is in the mid-range.
“His big thing is he has a hard time expressing himself.”
The smiley student of Crossroads Public School communicates with a small vocabulary, gestures and some sign language.
Sitting on the floor with his dad and brother nearby, Dylan rocks back and forth, and is able to move his legs and left arm, but walking remains a challenge.
Eight-year-old brother Colton said he often gets questions about why Dylan uses a wheelchair and why he doesn’t “speak like we do.”
“I don’t want to call it ignorance because it’s not ignorance,” Matt said. It’s more a case of people taking small things for granted.
“A step to you is nothing, a step to a wheelchair is everything.”
Cerebral palsy is caused, often at birth, by a lack of oxygen to the brain, he said, and attributes Dylan’s condition to how he got caught in the birth canal during labour.
He recalls being a “little scared at the time.”
“The unknown is always scary,” he said. “As a parent, you have to be adaptive.”
Over the years Matt said he’s found tremendous support in the community, through organizations like Red Roof Retreat, where Dylan has attended summer camp.
The family is taking Dylan’s future step by step, with high school being the next big chapter ahead.
“We’re always going to do the best we can do to make him succeed,” Matt said.
However, it’s been an “amazing journey” watching his son overcome many obstacles in life.
- The Candlelight Stroll is Friday, Dec. 1. A few thousand people generally turn out for it the walk through the Heritage District. The opening ceremony starts at 6:30 p.m. and the stroll begins at 7 p.m.