“Alex’s next fall could kill him.” My family was in crisis.
My brother, Alex, was born with cerebral palsy and he lived an active and vibrant life for many years. In 2004, he lost his balance and fell, suffering neurological damage, leaving him paralyzed from his chest down, and needing help with daily life. I moved back into our family home to help our elderly mom, and we sold our family business to look after Alex full-time. The prognosis was grim, so I put his name on the Participation House waitlist in 2004.
In 2013, Alex’s wheelchair took a spastic turn and pinned him in a ditch under his 300+lb power wheelchair. As a result, he suffers from severe chronic neck pain and is unable to turn his head, lay flat, or turn without pain. His world became very small.
Alex suffered a few more falls, which caused bruising to his spinal cord and lost many critical functions. He was admitted into Parkwood Hospital in 2015, and we were told that his next fall could kill him. We sold our family home of over 30 years and moved into a one floor accessible condo.
Alex is considered medically fragile, which significantly reduced his options: live at home and be cared for by our weak, elderly mother; or live in a nursing home at the age of 48. Alex indicated that he would rather exercise his right to die than live in a nursing home.
After 13 years on the waitlist, our lives completely changed; Alex finally receives 24/7 supports from Participation House. We are no longer his caregivers, and we can be a family again. Participation House is in a league of its own. They not only provide a safe, accessible home with excellent supports, but are devoted to caring for the whole person, including his emotional and mental needs. He is able to participate in activities in the community as he wishes, and his staff team help to identify meaningful opportunities. The staff are the most giving, caring, and compassionate people I have ever met, and I am truly humbled by each and every person at Participation House.
Participation House should receive a donation because they support some of the most vulnerable people in the community, and there are no other community support options for people considered medically fragile in the area. A donation for Participation House would be able to help people like Alex and help other families in crisis.
Founded in 1988, Participation House Support Services is a registered charity that supports more than 200 people with complex medical, physical, and developmental disabilities in more than 50 locations throughout London and region, providing 24-hour care in residential homes, day/overnight respite, recreational programs, support for those living with chronic mechanical ventilation, as well as those living at home with their families.
Although I have no specific connection to Lerners, I have a general knowledge of them, and I admire them for their generosity and connection to the community.
Learn more about Participation House Foundation
There were 4 four other stories describing the impact of the work of PHSS that almost made the Top 10 finalists. Read these Honourable Mentions here.
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