Tammie Moretton is a parent who has journeyed the intricate road of caring for and raising a child with complex needs, and who sheds light on the challenges faced by such families in Canada.
In this episode of the I Care for Rare podcast hosts Sandra Markus and Sherrilynne Starkie interview Tammie Moretton, a parent who has journeyed the intricate road of caring for and raising a child with complex needs, and who sheds light on the challenges faced by such families in Canada.
I Care for Rare is more than just a podcast; it's a social advocacy campaign that seeks to drive reform in healthcare and community support systems for rare diseases. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice.
Tammie shares her personal experience of adopting and raising her son, Cai, who needs include autism, juvenile diabetes and asthma plus trauma and attachment issues stemming from the abuse he suffered as an infant and in care. Cai has come a long way in terms of his development and is now a teenager on the cusp of adulthood. He faces an uncertain future as he prepares to leave school in a system that provides little specialized healthcare and few social supports.
Tammie offers us a glimpse of the resilience she needs to navigate the Ontario healthcare system as she continues to advocate for her son's growth and well-being.
Tammie, who is disabled herself, explains, “Because of the type of disability I have and the illness I had when I was young, I learned to live in the moment. And that's a coping strategy I have brought to parenting with Kai. If I didn't live in the moment, I would be under the covers and not get out of bed on a daily basis. So, I have to be in the moment with him and hope that tomorrow brings something better.”
This conversation highlights the need for a comprehensive national strategy to support people with rare diseases, their families and carers and explores potential solutions for better social supports.
This podcast highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include:
"I Care for Rare" calls on both the Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.
Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.
Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017.
Here’s how you can help:
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About Tammie Morton: