The day I regained myself, thanks to Evrysdi and ‘The Little Mermaid’
After months of crowdfunding, a writer is offered access to the SMA treatment
Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Surrounded by beeping machines, monitors, wires, and tubes, I had trouble feeling like anything more than a patient during my hospital stay last September. It was as though I couldn’t imagine a time before or after falling ill. My lack of access to the world for the first few days didn’t help.
I couldn’t even let my best friend and fellow SMA News Today columnist Brianna Albers know I was in the hospital. My caregiver had to find her contact and type the message out for me.
Regaining the ability to use my smartphone as I recovered was a relief. I didn’t have to sleep the day away or watch the nurses like they were a reality TV show. I couldn’t type due to a hand injury, but I could watch YouTube, TikTok, Netflix, and Disney+. These portals to the world outside were enough to help me feel more like a person.
Then, when I watched the teaser trailer for the remake of “The Little Mermaid” on Sept. 9, I once more felt like me — as in Sherry, the girl whose life was defined by moments with fairy tales and musicals and a million other things — even if momentarily.
Little did I know that this movie would take on further significance to me, months later. On May 27, the same day I’d planned to watch the film, I took my first dose of Evrysdi (risdiplam), an oral disease-modifying treatment that can stabilize SMA.
A deal for a poor, unfortunate soul
Even two weeks after receiving the news that I could finally get a prescription for Evrysdi, it all still feels surreal.
I’d been planning to see “The Little Mermaid” since April. I wanted to go with my little brother on Thursday, May 25, the day of its release in Singapore. However, because my brother serves in the Singapore Navy, he spends weekdays training as a diver in camp, and family outings are restricted to the weekends. So Saturday, May 27, it was.
I was disappointed, but it was as if the stars aligned. On May 24, the day tickets for “The Little Mermaid” were open for booking, my neurologist called me.
She said she’d been speaking with Roche, one of the pharmaceutical companies that market Evrysdi. Roche had learned that I was crowdfunding to buy a year’s supply, which costs 375,000 SGD (about $280,000). However, the fundraiser lost momentum, and I hadn’t raised enough for even one bottle. Roche knew it was unlikely I’d raise enough money, so as a kind gesture, it offered to put me on their compassionate use program for three months so I could try Evrysdi for free.
My neurologist gave me a day to consider the offer. I took the time to consult with Brie, as she’s had to fight for Evrysdi funding as well and has experienced improvements since taking the drug.
The next day, Thursday, I accepted.
On Friday, my mum picked up the prescription.
Mum and I decided we wanted to let my brother witness my first dose on Saturday — “Little Mermaid” day.
‘Come on, Ariel, time to stand’
It didn’t even occur to me that I’d witness Ariel have her chance at the life she wanted the same day I’d have mine until halfway through the film. As she learned to walk, experienced the human world, and built a romantic bond with Eric, tears welled up in my eyes. For the first time in a long time, I could see a future for myself, and I saw it in hers. If it weren’t for me hating the thought of ruining my mascara, I would’ve sobbed like a child in the theater.
It’s still early days. But my God, in less than a month, I’ve already experienced so much improvement in my swallowing and speech. I’ve stopped choking on liquids entirely.
While I’m grateful I’ve gotten to try Evrysdi, I’m also so much more upset that this drug isn’t financially accessible for most with SMA in Singapore. It has the capability to give people’s selves back to them. Isn’t that worth more than money?
I don’t know what I’m going to do when my supply runs out if I don’t have the funds to continue treatment. For now, I’m focusing on getting better and continuing to raise awareness of SMA in Singapore, in hopes that things will change.
“I don’t know when/ I don’t know how/ But I know something’s starting right now/ Watch and you’ll see/ Someday I’ll be/ Part of your world.” — Ariel, “The Little Mermaid”
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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