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Some wonderful news! NF


Big Cliff

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My son ended up back in the hospital again for a week because the Dr.s had tried to reduce one of his medications, it was something he could only stay on for a short period of time.

 

He was told that he needed a medication that was going to cost $60,000.00 a year and it wasn't covered by OHIP, as any of you dads know "it takes whatever it takes for your family" so we were exploring options at a rapid pace because time was limited and we were running out of options.

 

I just got a phone call from my son; because his case is so severe his Dr. went to bat for him and he has been approved for an experimental treatment which to date has been 100% successful in treating the condition. Apparently the Trillum Foundation is going to pick up the cost. It isn't a cure but if all goes well he should be able to live a reasonably comfortable and normal life!

 

They aren't tears of joy, my eyes just leak!

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Good to hear Cliff,as well hope everything works out well. Your doctor and ours should be fighting for us,given the high costs, and experimental drugs that take far to long for us to use. I couldn't afford to pay the original price ,I would try ,but probably not good results.

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You know Cliff, many times in life someone will say "I know how you feel".... but I can say it quite frankly with Jen currently on a $5000/ month pill. So I know EXACTLY how you feel Cliff, as some weight get's lifted off your overly responsible shoulders simply by someone saying "it's covered" !

 

Chin up... and take another step forward. We're not done yet my friend !

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