Considering the unthinkable

Parents forced to provide 'inhumane' home care say leaving son at hospital may be only option

- AMY DEMPSEY RAVEN

One morning in January, 14-year-old Jonathan Mitkovski refused to get out of bed. His parents wondered, at first, if he was coming down with a virus. It had always been a challenge to figure out what was bothering Jonathan. Born with Down syndrome and diagnosed with autism at age three, he had never spoken.

Before his sudden decline, Jonathan had been a gentle child who greeted everyone with a smile. He loved roller coasters, the Maple Leafs and McDonald's french fries. He played drums in a school concert. Whenever his father asked, "Who wants to go outside?" Jonathan would be the first at the door, waiting for someone to tie his shoes.

His parents, Jole Mitkovski, a schoolteacher, and Katherine Mitkovski, a public servant, struggled at times to manage Jonathan's needs while caring for their two younger children, 9 and 11, and working full time, but they were getting by until his health took a turn.

Within days, Jonathan stopped walking, eating and using the toilet. He wouldn't go to school. He stayed in bed for more than a week. When his parents tried to move him, he kicked, punched and threw things, putting holes in the walls. "He was like a different child," his father said. Over time, Jonathan lost weight and became dehydrated.

At a crisis point, his parents called 911. The dispatcher sent an ambulance and a police escort.

Doctors at the Hospital for Sick Children diagnosed Jonathan with Down syndrome regression disorder, a rare and debilitating condition that causes a rapid loss in functioning and behavioural changes.

Jonathan spent a total of 14 days at SickKids, where his parents say he received excellent care, but did not improve. Doctors tried to transfer him to Holland Bloorview Hospital, a rehabilitation centre for children and youth, but he did not meet the criteria for in-patient admission, his parents said.