Ray of Hope wishes to raise S$375,000 to allow Sherry to receive treatment. This treatment will allow Sherry to maintain her quality of life, by allowing her to perform daily tasks. Payment will be made directly to the hospital, based on the following installments:

• $187,500 – 50% of campaign target

• $187,500 – remaining amount of campaign

Hello. I’m Sherry Toh, a 24-year-old socio-political and gaming journalist and advocate for the Spinal Muscular Atrophy (SMA) community. I myself have SMA Type 2, and have experienced the grief of losing one’s body to a progressive muscle-wasting disease like SMA. SMA, as some Singaporeans will know after witnessing the Ray of Hope campaigns for the babies Zayn and Devdan, is caused by an incomplete gene that thus produces insufficient survival motor neurons. Without sufficient motor neurons, one gets significantly weaker as they age, which is what’s happening to me. As a recent example, I could hold my head and spine up on my own just a year ago, but now I need piles of pillows for support. Time will eventually lead to me requiring invasive procedures for respiratory support and feeding, and I’ll be bedridden at a certain point. 

Fortunately, there is a daily orally-delivered medication that increases motor neuron production and stabilises SMA’s progression called Risdiplam. But after discussing the treatment with my doctors, one obstacle blocks myself (and others with SMA) from access to the treatment — the astronomical cost that could go up to $375,000 a year. It’s a price tag no SMA patient can afford. And yet, it’s a life-saving medication that is necessary for me to maintain my quality of life, allowing me to perform tasks from eating to doing my dream job as a journalist indefinitely. 

I hope to raise awareness about adults with SMA and prove investing in us is worth it through this fundraiser. I’d also like to advocate for a lower price for Risdiplam and other SMA treatments for all SMA patients. Meanwhile, I need to buy time for myself before hospitals in Singapore can prescribe Risdiplam at a low cost for patients. My decline has been unexpectedly rapid in the past year, and is still continuing. This is why I am fundraising for one a year’s worth of Risdiplam. 

Stabilising my condition is of great importance because it would allow me more time with my loved ones, and it’d help me avoid further medical complications and invasive procedures. It’d also let me continue contributing to society with insight from the lens of someone with a severe disability. My career itself, ironically, has progressed rapidly over almost two years. Since becoming a journalist, I’ve written socio-political features for Singapore’s Rice Media and have established a career in gaming journalism with bylines in UK and US publications. I contributed an essay on games accessibility and disability representation to Singapore’s first ever Disability Studies anthology, Not Without Us: Perspectives on Disability and Inclusion in Singapore. I have an advocacy column for SMA News Today, a health news site for SMA patients. And in December 2022, I started my own games review site, Finally Playing.

I urge you to share this campaign with your friends and family, for both myself and all SMA patients in Singapore. Even if you cannot donate, I’ll be grateful for the awareness raised. If you wish to contact me for any reason, my email is: musiquecheri@gmail.com

With love and thanks,

Sherry

From Ray of Hope

Sherry’s campaign has been verified by Ray of Hope case managers. We sighted doctors letters stating the above mentioned treatment options and have also verified with the physician treating her.

Please donate generously to give Sherry hope to maintain her quality of life. 100% of your donation will be used for her treatments.

FAQ 

• How will the funds be used, and where will the funds go?

The donations made through the campaign page go towards Sherry’s treatment for Risdiplam. Ray of Hope will handle the donations received and pay for the cost of treatments.

• What is the minimum amount needed to be fundraised before Sherry can receive treatment?

The physician will prescribe Risdiplam when we have raised at least half of the target amount.

• What happens if funds raised are insufficient for Sherry’s treatment?

Sherry’s physician shared that results are most apparent at 6 months minimum.

If we do not achieve the minimum target of 50% within the given time frame, Sherry would like whatever amount we manage to raise to go to the next SMA patient crowdfunding for the new treatments that target SMA. 

“The money would be a big help to us in any capacity, especially as I get older and medical costs mount…I don’t want the next patient or their parents to go through this specific pain of having to fight to get treated.” – Sherry

• How can I donate?

All donations shall be made via this campaign page. Kindly refrain from directly donating to ROH’s UEN via Paynow as we are unable to track your donations to the campaign you wish to donate.

• Does Ray of Hope take a cut or charge an admin fee for running this campaign?

Ray of Hope does not take a cut from donations nor charge an admin fee for helping our beneficiaries. We even cover the bank and credit card charges we incur so that 100% of your donation goes to the campaigns. These fees can come up to 3% of the overall campaign target. 

However, as donors, you may choose to give to Ray of Hope so we can continue to help more beneficiaries like Sherry at the checkout page. This donation is optional.