Sydney and I went right down to Boston and met with him and that have, I can’t even describe to you what it was like. It was just that moment of hope, and that was the part that was really hard for us — because at that time we hadn’t had any hope.
Sydney had some special imaging there that was developed for individuals with TOS. After which, along with that, she had some guided Botox injections that were an assistive diagnostic tool. The side-effect was that she was capable of have some relief from her pain for the primary time from the Botox injections. There isn’t a magic bullet, however it was like, OK, these people know what they’re doing. They understand TOS. They understand the complexity of it.
How long did it take to get an appointment?
They took us quite quickly. We applied in September, and we were there in December.
Before then, it was 4 years of coping with it [since her diagnosis]. And if we return to her initial symptoms at age nine, we had been coping with this mystery illness for six years.
And at a time period when 4 years is rather a lot. If you’re 16 to twenty, that’s an enormous chunk of your life.
She missed her highschool experience altogether. It was only one surgery after one other.
Did the provincial health plan cover the prices of the surgery?
We did make an application to OHIP but, unfortunately,
. Once we realized that there was hope and we could possibly be helped, we decided as an alternative to achieve out to our family and friends and community. We began a GoFundMe campaign, and, with the assistance of family and friends and strangers and all
kinds of fantastic people in our community and beyond, we were capable of raise half of the funds to get each of Sydney’s surgeries.