His story? When Lythall was six-months-old, his mother, Irene, rushed him to CHEO where he had an emergency intubation that saved his life. He has rarely taken a breath without mechanical help since that day.
He spent the next six years in CHEO’s intensive care unit, which then didn’t have windows or televisions.
Despite having a severe form of NM, Lythall grew stronger and graduated to other hospital wards, but he remained a full-time resident of CHEO for the first 19 years of his life. He relied on staff to manage his ventilator, to suction mucus from his lungs, and to feed, clothe and bathe him. He left the hospital only to attend high school and to visit his family in Orléans.
As a teenager, Lythall was moved to a long-term care unit populated by infants and toddlers. It steeled his resolve to leave CHEO, but he was given only two potential destinations: a nursing home or a group home.
Lythall didn’t want another institution; he wanted to experience life. So, alongside his mother, he lobbied energetically for two years to win the funding (more than $170,000 a year) that would allow him to live independently with 24-hour attendant care. Eventually, the Lythalls convinced the province it made economic sense to let Ryan live on his own.
In March 1994, Lythall moved into a Centretown apartment, making him one the first in the country to live independently on a portable ventilator.
As a full-time working mom and a full-time medical caregiver to my 4-year-old son, I have many workspaces. My workspace is wherever my son needs me...