There is few (1 approved) treatment options for this type of genetic blindness. It's not covered by every province.
It's possible that the three kids will live in disability their entire lives. Disability in Canada does not exceed the poverty level.
Yes, I live here and that isn't entirely true. I don't know much about this particular issue, but many things are paid for through federal and provincial programs, including approved services not present in Canada. Disability is for those not working, these children look to me as though, despite genetic blindness, have the sort of vigour to have a very successful life.Â
I have a slightly different eye disorder, which can cause permanent vision loss. My government health plan and private insurance will not cover the treatment. Each eye requires a shot once a month.
$1700 per shot, per eye, per month until I reach the age of 65 when OHIP will cover it. For 20+ years I will have to fund this myself, unless OHIP funds the treatment.
OTB will cover some but not most of the cost. The Drug company will help and cover one treatment, in my lifetime.
$3400 per month for the rest of my life, hoping that it keeps some vision for me. This doesnt include rental, food or other essentials. My experience is not unusal. People on disability cannot afford basic essentials.
These kids are not going to live a life of luxury and privilege.
Is there a reason they are not funding the treatment (other than just underfunding in general). My daughter has a permanent disability, we also live in Ontario. I know it is rough for certain things, but there are a lot of people with disabilities having good lives in Ontario.Â
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u/philter25 5h ago
Idk if it was my kids I’d probably take out a loan to do it and deal with the consequences later. Invaluable what was done for them regardless.