FERGUS – In a year that’s required a lot of courage and fortitude, a Fergus family is now doing the bravest thing: asking for help.
“I stumbled upon a quote – that the bravest thing to say is ‘help.’ And the truth is, we need it,” Melody Dekorte said in a phone interview on May 28.
The pandemic has been hard on everyone and Dekorte is the first to acknowledge a lot of her family’s troubles are like everyone else’s: lay-offs, online schooling, and limited help from friends, family and health professionals due to pandemic protocols.
But 2020 was also the year Scarlett Dekorte, who just turned nine, stopped walking – a sign that Rett syndrome had taken a turn for the worse.
Rett syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, such as losing the ability to speak and walk, and difficulty eating and breathing.
Scarlett also started having seizures, “and that started a domino effect of health complications,” Dekorte said.
“We knew this was a possibility, but we didn’t think it would be this soon. Six months ago she was jumping on the trampoline.”
The family renovated its home so Scarlett’s bedroom and bathroom can be on the main floor. And they got her a wheelchair so she can move more easily indoors and out.
But now they need a wheelchair van, and that’s where family has stepped in.
Scarlett’s uncles, Dave and Jeff Katerberg, are into biking and wanted to do an extensive trip as a personal challenge this year.
They decided to turn their personal goal into a fundraiser for their niece, Scarlett’s aunt Christine Katerberg said in a phone interview.
“If we can lessen the stress for them, that’s what we want to do,” she said. “There’s nothing better than knowing the community is around you.”
Scarlett Dekorte’s uncles and cousins are planning a fundraising cycle to Goderich and back on June 12 to raise funds for a wheelchair van for her family. (Photo: www.40000bikeride.com)
So Dave and Jeff, along with Scarlett’s cousins Aidan, Ben, Bryce, and Cam, and her brother Evan, will travel the Guelph to Goderich trail and back on June 12, and are hoping for community support through sponsorship and donations.
They’ve started a website – www.40000bikeride.com – with information about Scarlett, their route, and ways to donate.
The route is 250km and the group has been training all winter. They hope to maintain a pace of 21km/hr with rests every hour or so.
“I did some biking with the boys and clearly, it’s been decided that I’ll be driving the van with the food and water,” Katerberg said with a laugh.
The goal is to raise $40,000, “and we’re already around $29,000,” she added. “Jason and Mel are close to getting the vehicle. The timing is really great.
“And I really like the family affair it’s turned out to be. It’s great to see my boys so willing to pitch in.”
Dekorte said it’s both “wonderful” and “humbling” that so many people have already made donations – some she hasn’t seen in years and others made anonymously.
“I’m blown away by it,” she said.
Scarlett is an amazing, adventurous little girl, her mother said, with a great sense of humour and she’s both smart and patient.
“She’s such a tough kid. It’s like she’s trapped in a body that doesn’t move,” Dekorte said.
“We been dealt some tough cards. I could choose to wallow in misery, or I could choose hope. I hold on to hope.
“And if loving my kid means putting aside my pride and accepting help, I’ll do that too,” she went on.
“This is giving us strength and we are so grateful.”
