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sherlisass · 2 years ago

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cross-posted from my facebook:

To borrow from the legendary Taylor Swift on her Eras Tour: it’s been a long time coming. For the past six months, after realising that SMA is progressing at a rapid rate in my body now and having a breakdown in part due to that, my mum and I reached out to Ray of Hope. We asked if they could help me with financial access to a $375,000/yr treatment that will halt the disease progression the way they helped baby Zayn and Devdan. We asked if we could fundraise for enough to stabilise my condition for a year, while we see what MOH does with supporting the treatment for SMA patients. Last Friday, my fundraiser was posted: https://rayofhope.sg/campaign/sherry/

It wasn’t an easy decision to ask Ray of Hope for help. At several points, I nearly pulled out. Firstly, it’s a sensitive issue to ask people for money, and doing so is intensely stigmastised in Singapore because healthcare and finances are seen as highly personal responsibilities. Second, I was worried about the impact public recognition might have on myself and my family. And third, did I really want to put a price tag on my life?

But facts are: I wasn’t the one who put a price tag on my life. The manufacturer of the treatment, Roche, was the one who put the $375K/yr price tag on my life and the lives of other SMA patients. (Which, by the way, is more than five times what the average non-disabled Singaporean earns.) And I’m fundraising because of my family as well. My brother Gabriel reminded me of that when he told me that, when I almost died in the hospital last September, he was afraid I’d die without seeing him fulfill his dream of becoming a doctor.

I want to be there for Gabriel at his med school graduation. I want to take my dad to Taylor Swift’s latest tour after he took me to her last Singapore show and said her music makes him feel young again. I want my mum to see me achieve greater things in my career after seeing she was far more ecstatic than I was about me contributing to Not Without Us, Singapore’s first Disability Studies anthology. I want to be there when my best friend Brianna Albers, who has used every opportunity she’s had to advocate for me to be treated, is a published novelist. I want to go to all the family events I’m invited to for years to come. I want to see who else God wants me to meet, because almost everyone I’ve met so far have been lights in the darkness.

It’s important to remember that time with our loved ones and fulfilling our dreams is a right every SMA patient should have. Without treatment or a miracle, the odds of us having those things decreases significantly with time. It used to be something we had to accept, but that’s not true anymore. And it’s why, if I don’t raise enough to fund the minimum span of time it would take for the treatment to stabilise me, whatever I’ve raised will go towards the next SMA patient fundraising through Ray of Hope. Because there will be more, and I want to do my part. And even if you can’t or don’t want to donate to me, I hope you do your part by spreading awareness of SMA, this life-saving treatment, and the injustice of its cost.

#text post.#update.#disability.

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