A 6 year old girl from Woodstock is featured in a video highlighting children with rare diseases in Ontario.
It's National Rare Disease day today.
The day is meant to recognize people like The Sangers Family from Woodstock, whose daughter Charlotte was diagnosed with Juvenile Idiopathic Arthritis. Charlotte's Mother Marissa Sangers says they first became aware of her disorder when she had a swollen toe at two years old.
"She had something going on with her vain's, we saw multiple different specialists and finally a specialist in London called us and said, don't bother coming to your next appointment, it looks like arthritis, I am going to refer you to a team. It took almost 6 to 8 months before we were able to get a diagnosis for her and even now she takes some pretty intensive medications and fights through a lot of different stuff. She has to do physio therapy every day at school, so yeah, she is our little fighter."
The organization Cassie and Friends is trying to help build support for patients with Rare Diseases at LHSC Children's hospital. Sangers says Cassie and Friends are from B.C. and are trying to branch out into Ontario.
"They are trying to create a cabinet with resources, so gift cards, gas cards and splints and braces for the London Children's Health Sciences Foundation in the Children's Hospital in London, where Charlotte is a regular patient. They are also trying to create a parent to parent program, so parents like me don't feel alone in the process."
Sangers says it has been therapeutic to meet other parents going through the same thing.
"Finally I felt like there was other parents that were going through the same stuff as us, because in Woodstock, we know of other child who is suffering from Woodstock. Sometimes you feel alone because people may not really understand what is going on."
Sangers says they are trying to raise awareness. You can learn more about Cassie and Friends and donate to the cause online here.
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