Teen with arthritis making best of summer
Jessi Hough’s summer hasn’t turned out too badly after all.
The 13 year old with juvenile idiopathic arthritis was inundated with thoughtful wishes and offers of help after a story in The Standard earlier this month about her thwarted plans to go to camp.
“It’s good,” Jessi said Friday. “We got offered quite a few things like a day camp and the Arthritis Society offered us to go to the Great Wolf Lodge, so that will be really fun.”
Jessi and her family were upset after she was told she could go to a week-long special summer camp up north and then told she couldn’t be accommodated without a personal support worker.
She’d already bought her camping gear and a scrapbook to document her trip.
The Arthritis Society, which is running the camp for the first time this year, said they didn’t realize the extent of Jessi’s disability. While the camp is set up for kids with arthritis in wheelchairs, it wasn’t set up for those who require additional care to get dressed, go to bed or go to the washroom.
The Arthritis Society continued to search for a personal support worker for Jessi and did find one in the eleventh hour. But by then, Jessi didn’t want to go anymore because there were too many uncertainties about the details and she was turned off.
“I don’t know. The whole idea of what happened and everything,” she said.
Mom Miranda Kitchingman said many people called after the story ran offering to help in any way they could.
Some even offered to go with Jessi to camp and act as a personal support worker, not realizing it’s a trained, licenced position and not even Kitchingman is allowed to fill it without a licence.
“I wanted to say thank you to everybody for offering me the services,” she said.
Kitchingman said the Arthritis Society tired hard to get Jessi into the camp and felt horrible about what happened, calling daily.
“They worked hard to find a PSW, they lined two up just to be safe. They tried their hardest but Jessi was at the point where she was ‘Sorry, I’m not going,” Kitchingman said.
“They’re very apologetic. They’ve been good through the whole thing. They’re definitely making it work next year, that’s the goal.”
The Arthritis Society is now sending Jessi and the family to Great Wolf Lodge for a night and two days, a treat that was too expensive for the single mom to afford on her own.
The resort has an accessible pool and rooms, Kitchingman said, adding the society is also giving Jessi spending money.
Jessi, going into Grade 8 and E.I. McCulley, is also going to a day camp for a day in Welland next week.
The City of Welland invited Jessi after the story ran. The camp is at St. George school where there is a water wheelchair and ramp. The theme of the day is a “camping we will go,” Kitchingman said.
“We’ll still be able to take pictures and we’re going to make a day scrapbook.”
In the meantime, Kitchingman is working on bringing a beach wheelchair loaner program started by Smile Mass in the U.S. to Niagara. The program lets families borrow beach wheelchairs so people using wheelchairs can actually go into the water.
She’s started a Crowdrise fundraising page to get the project off the ground. It’s at www.crowdrise.com and can be found by searching “Bringing Floating Beach Wheelchairs to Canada” and look for organizer Miranda Kitchingman.