Michal Kaliszan, 39, has Spinal Muscular Atrophy (SMA), a genetic condition that causes progressive muscle weakness.  Due to his disability he needs 24/7 support.
“I need full assistance with things like going to bed, getting out of bed, dressing, toileting, preparing meals,” Kaliszan said.
When he was first diagnosed with SMA, doctors told him he had a life expectancy of 16 years.
“Luckily I’ve beaten the odds so far,” Kaliszan said.  “I’m 39 now, so I’m very grateful to still be here and hopefully I’ll be around for at least a little while longer.”
Kaliszan credits his parents, who took care of him, for still being alive.
“They sacrificed their whole lives to make sure I had as normal a life as possible,” she said.
Kaliszan’s father died of colon cancer in 2002. Two years ago, his mother was diagnosed with stage four lung cancer that has spread to the brain, liver and pancreas.  He is now in palliative care.
“Unfortunately there’s not much else doctors can do at this point,” he said.

Michal Kaliszan with his father and mother in 1994. (Courtesy: Michal Kaliszan) Kaliszan said he will soon have no one to take care of him. He has looked at his options given to him by the government but says there is a lack of support available for people with disabilities. “A lot of the options that people come back with say supportive housing,” Kaliszan said. “It’s all based on the model where there are still very scheduled shifts and the expectation is that the disabled person can fend for themselves.” Kaliszan says that, without help, the province will likely place him in a long-term care home, which he claims will be his “death sentence.” “I feel like it’s going to be a complete loss of autonomy and self-determination,” he said. “They’re very short-staffed in long-term care as well, so it’s not like someone is going to be available whenever I need them. For example, to help me with the toilet, it’s going to be a situation where I’m going to sit with three other residents and we’re all sitting with soiled diapers waiting for a free PSW or a nurse to come help. “Especially at 39, I feel like it’s not something I want to be involved in after all the hard work my parents have done to allow me to live in the community.” Kaliszan has started a fundraiser with a goal of $300,000 so he can provide around-the-clock care at home. She said that amount would cover about a year’s worth of care for him, with the majority of the funds going towards the salary of support workers. More than $3,000 has been raised so far. “I can’t express my gratitude enough,” Kaliszan said. “I’m really glad that there are people out there who are willing to help and recognize that this is definitely a problem. “I’m hoping that by raising awareness, maybe there’s a way we can push for systemic reforms, because I’m not the only one in this situation.”