Saskatoon family wants a rare disease strategy for Canadians
|globalnews.ca 09 Oct 2019 at 08:28|
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Cassidy Evans is a normal 11-year-old girl ‚ÄĒ she loves jumping on her trampoline, bowling and when she grows up, she wants to be a lifeguard.
Evans also has cystic fibrosis and spends almost three hours a day doing therapy and taking medications to keep her body strong.
Cystic fibrosis affects the respiratory and digestive systems of almost 4,000 Canadians, shortening a person‚Äôs life to less than 40 years.
Evans and her mother, Kimberly Evans, have been advocating the government for a rare disease strategy .
Kimberly said the strategy would allow for better access to medication and research.
‚ÄúRare disease, unfortunately, has such a minimal population to these diseases that it‚Äôs really, really hard to get access to medications,‚ÄĚ she explained.
They are keeping a close eye on the election. They‚Äôve been asking door knocking candidates where they stand on developing a rare disease strategy for Canada.
Kimberly Evans said many candidates don‚Äôt know.
‚ÄúTo know that politics and bureaucracy is getting in the way of [my daughters] health,‚ÄĚ she said.
‚ÄúI just won‚Äôt stop until something is done about this.‚ÄĚ
Evans said Ireland has a rare disease strategy that is working to help those with uncommon diseases and she wants Canada to step up.
‚ÄúAs a parent knowing that my daughter‚Äôs health is on the line because of a federal budget is almost more than I can bear,‚ÄĚ she said.
Although Cassidy has to take over 30 pills a day and spend hours each day doing treatments, she keeps her spirits high and wants to keep working towards making life easier for anyone with a rare disease.
‚ÄúI know that if I keep pushing and I do what I need to do then it‚Äôs going to make a big difference,‚ÄĚ she said.
An active petition with over 18,000 names on cystic fibrosis website is collecting signatures to give to the next Canadian government with the hope they will see change.