Chris Neil’s dream team won’t score many goals but they’re sure to win a few hearts.
The team, made up of six children from the greater Ottawa area who are receiving treatment and respite services for life-limiting illnesses, are leading the charge for this year’s Walk Roll & Run fundraiser at Scotiabank Place on June 16.
Neil and his wife Caitlyn were on hand at the Ottawa Senators home arena on May 31 to introduce the children and officially kick off the 10th-annual fundraiser for Roger’s House.
“It’s so inspiring to visit the children and families at the house,” said Caitlyn. “Understanding the challenges they face every day and how they persevere is incredible.”
The veteran of this year’s dream team is Isabella Carriere, an 11-year-old who has been with the pediatric palliative care centre since it first opened its doors in 2006.
The Lancaster, Ont. girl has metachromic leukodystrophy, a rare genetic disease that results in a loss of brain function, and physical symptoms including muscle wasting, paralysis, blindness and dementia.
There is no cure.
“We go there sometimes for help when we don’t know how to treat her,” said Isabella’s mother Melissa.
Last month, Melissa and her husband Stephane took Isabella to Rogers House because she was having trouble sleeping and cried throughout the night.
“Now she’s sleeping good,” said Melissa. “We’re pleased.”
Now in its seventh year of operation, Roger’s House has admitted more than 2,200 children from across Ontario and western Quebec battling serious illnesses.
The eight-bedroom facility, located on the grounds of CHEO, provides a home away from home for the child and their family, where staff and volunteers provide treatment and respite care.
Four-year-old Campbell Labonte, an Embrun boy who has cerebral palsy and is deaf and blind, was admitted to Roger’s House two years ago.
“It was the best decision we could have made,” said Campbell’s mom, Joanna. “It’s provided such great support to our family; I mean we’re forever thankful. It’s a resource that we’ll always be able to use until Campbell’s 18, and for that we know it’s going to bring a lot of hope to our family.”
Joanna and her husband Bert both work full-time jobs in the Canadian Armed Forces.
“Roger’s House offers us that break when we need it, to just rejuvenate and feel ourselves again.”
Roger’s House was a great help for Alex Vanzyl, whose 18-month-old daughter Maci has Phelan-McDermid syndrome, a rare chromosomal disorder which impairs speech, movement and development, and requires 24-hour care.
Maci is fed using a tube and sleeps hooked up to a machine to assist her breathing.
“She’s deemed palliative because she needs equipment to sleep at night,” said Vanzyl.
Even with the help of her mother, providing continuous care for a child with a life-threatening disease is exhausting, said the single mom from Beaverbrook.
“It’s just a break for me,” Vanzyl said of the help she received from Roger’s House. “They’ll take care of her, they cuddle her they love her, it’s like extended family.
“We mainly use it for respite, but there’s times when we’re admitted to CHEO and then we’ll just go to Roger’s House and stay for a bit and we’re totally comfortable and then go home.”
Henry Newton, an eight-year-old Ashton boy, has been visiting Roger’s House for the past two years, receiving respite care.
Henry has Lennox-Gastaut syndrome, a difficult-to-treat form of epilepsy that appears between the ages of two to three, characterized by frequent seizures.
“He has hundreds of little seizures every day,” said his mother Miranda.
Two years ago, Henry was able to sit up, talk and manoeuvre his wheelchair.
“The seizures came on suddenly and robbed him of that,” said Miranda. He’s not really talking anymore. He’s having a hard time holding himself up.”
Miranda and her husband Terry have gradually improved the situation with the help of the staff and volunteers at Roger’s House.
“It gives us breaks,” said Miranda. “It gives us time to spend with the other two kids.
“I don’t worry about him while he’s there. They take care of him and they look after us as well,” she added. “It’s about the whole family, not just Henry.”
About a quarter of the home’s funding comes from the Ottawa Senators Foundation, which raises nearly $800,000 annually through events like Walk, Roll & Run.
“The community has been so supportive,” said Lloyd Cowin, executive director of Roger’s House. “We really appreciate it.”
The money pays for medical supplies, special equipment for the kids, bereavement support for the families and the special extras that make Roger’s House a home, such as a children’s playroom.
“These families have a lot to deal with in their lives and anything we can do to help them is a real plus,” said Cowin.
The number of applicants seeking a spot at Roger’s House keeps going up from year to year.
“We’re afraid we’re going to go over capacity in the coming year,” said Cowin.
The children’s treatment centre takes in 450 patients a year and has a case load of 160 kids at any given time.
“We usually have occupancy of 85 per cent, which is about ideal for us, because it gives us a little wiggle room to deal with emergencies,” he said.
The house hopes to turn its basement into a teen recreation room, with a pool table, a television set and a stereo.
“Right now the playroom is younger child oriented,” Cowin said. “We’d like to have a place teens feel comfortable with.”
The money from the upcoming Walk, Roll & Run will help pay for that renovation.
This year’s Walk, Roll & Run will feature a tot-trot, and two-kilometre and five-kilometre routes, suitable for people of all ages.
Scotiabank Place will also offer a family fun zone, which includes Sens Street Tour activities, such as balloon artists, face painters and a barbecue.
Anyone who wants to support the event can register and collect pledges or sponsor Chris and Caitlin Neil at www.sensfoundation.com.