In January 1994 my sister-in-law, Fiona, gave birth to her son and my amazing nephew, Jason. Jason was born premature but after several months in hospital and the neonatal intensive care unit, Fiona brought Jason home. However, it was apparent very early on that there was something wrong. Several months later, Jason would be diagnosed with spastic quadriplegic cerebral palsy.
As a young, single mom, my sister-in-law received the devastating news that her son would never walk, may have limited speech, and would have diminished cognitive function.
A day in the life of Jason
Jason is now 28 years old. He has a smile that lights up a room and he loves to talk to everyone. However, he is fully dependent on my amazing sister-in-law for his everyday care.
Each morning, my sister-in-law changes Jason’s diaper, dresses him, uses a lift to raise him out of bed and into his wheelchair, brushes his teeth and washes him, makes his breakfast, and helps to feed him.
The list of daily tasks goes on and on, but this morning routine paints the picture of a day in the life of Jason.
The challenges are real
The level of assistance Jason requires is significant and expensive. It includes:
- Numerous assistive devices (a lift, wheelchairs, an accessible shower)
- Homecare for a brief period in the evening to allow my sister-in-law to take a break, step away or pick up groceries
Receiving needed equipment and support services is no walk in the park. Ontario’s Assistive Devices Program may fund a substantial percentage of a new wheelchair, for instance, but my sister-in-law still has to cover the remaining costs.
This is no easy feat for a single parent on a fixed income.
How the Ontario Federation for Cerebral Palsy helps
Thanks to generous donors, the Ontario Federation for Cerebral Palsy helps by providing:
- Grants to pay the remaining costs for some vital equipment
- Funding for scholarships and awards, participation in activities and emergency supplies during the pandemic (e.g., personal hygiene products, food)
- Support for research into the causes, improved treatments, prevention, and cures for Cerebral Palsy
- Information and linkages to other available provincial support services — a vital service which helps those in need of support to navigate a complicated system
Why I donate to Federated Health
So, this is why I donate — to support vital organizations like the Ontario Federation for Cerebral Palsy. I hope you will join me in contributing to the Federated Health Charities campaign.
Written by : Sheri Conely