A Richmond father has launched a second fundraising campaign to help support his severely disabled son while he searches for a long-term solution to fill the gap.
When it comes to Christmas wishes, Richmond resident Myles Dear is only hoping he can cobble together the much-needed funds to support his severely disabled son, Kyram, in the coming year.
Kyram, who has cerebral palsy, requires 24-hour daily care to ensure his survival. And Dear, a widowed father, recently launched an online fundraising campaign to help him cover his nine-year-old boy’s ongoing health-care expenses.
“Kyram can’t walk, talk, sit or stand on his own – and has a tendency to stop breathing while he sleeps,” says Dear, adding a trained nurse sits at Kyram’s bedside at night, while a disability support worker stays with him during the day.
Despite incredible challenges, Kyram is a smiley, bright-eyed little boy with a great sense of humour. An avid student at St. Luke School in Barrhaven, he has mastered kindergarten-level math, can spell words at a Grade 4 level and reads for comprehension at a Grade 2 level.
“The right amount of funding can propel a special needs child into the stratosphere,” says Dear.
In a major breakthrough just over two years ago, Kyram began communicating with his dad and one of his longtime caregivers, Charlane MacKenzie, through eye blinks and tongue clicks.
“Kyram has very sporadic control of his muscles, but there are a few muscles he has harnessed under his control consistently – the tongue click being one of them.”
Kyram now uses tongue clicks and eye blinks to control a speech-generating device attached to his wheelchair. Dear insists the professional caregiving team he has carefully built is integral to these developmental milestones. But it comes with a hefty price tag.
“Although we receive some government funding, there is still a shortfall of $65,000 per year,” says Dear, who works as a full-time software engineer at Cisco. “Literally all the money I earn in my professional job, I pay to Kyram’s caregiving team.
“Unless that shortfall is filled, I will lose my job and we will lose our home; these are the very black-and-white logistical realities.”
At www.youcaring.com/helpKyram, donors can contribute to the Dear family through a secure server. It’s the second time Dear has turned to a crowdfunding campaign for help. Unfortunately, it’s only a Band-Aid solution to an ongoing dilemma.
“This will only buy some time to allow me to negotiate a long-term, sustainable support arrangement with the Ontario government.”
Dear says one of the major barriers for families like his, who are seeking provincial funding for a disabled child, is that assistance is determined by gross annual income – expenses are not typically taken into consideration.
“I make too much money to qualify for benefits that low-income or families in total crisis would receive, yet my expenses equal my take-home pay,” he says.
“So if I do nothing but pay Kyram’s caregiving team, then I can’t pay my mortgage.”
That’s why Dear is advocating for a fundamental change in the way the provincial government assesses families with disabled children, so parents don’t have to choose between paying for basic living expenses and hiring top-quality caregivers to help their children thrive.
“The provincial government is not looking at my family holistically,” he says. “The reality is that currently the care of a complex needs child such as Kyram straddles two ministries in government – the Ministry of Health and the Ministry of Child and Youth Services.
“Each ministry is looking at the other to fix the problem, when in reality it can only be solved by them working together.”
While he waits for answers, wages are rising for skilled caregivers who can benefit Kyram. As the boy grows, so do his equipment expenses – his highly customized wheelchair alone will easily cost $20,000 when it comes time to upgrade it later this year.
Dear has been working tirelessly for two years to bring attention to the problems faced by families of disabled children. He says there are other families in the Ottawa area facing bankruptcy due to the systemic problem of chronic underfunding, and there will only be progress when the government works in tandem with families.
“I am asking the provincial government to be a partner in Kyram’s support,” he says. “I want to be a part of the solution, not part of the problem.”
As Kyram will always require a high level of care, Dear says long-term funding arrangements are essential.
“What keeps me up at night is thinking up better ways to improve things for Kyram, to pull out his potential.”
Dear says funding a knowledgeable and deeply committed team for Kyram will ensure his future contribution as a citizen.
“You’ve probably heard the expression, ‘It takes a village to raise a child.’ We need to recognize that it takes a big city to raise a special needs child.”
Photos: IPC Canada Photo Services Inc.