Nurdiana binte Rohop sent a message to Chua Sock Koong that said:
I hope this email finds you well. I'd like to reach out to you regarding my son's medical and financial issues.
I'm a single mother of 5 boys ages 10-1 years old. My youngest son, Rayyan Qush (14months old) was diagnosed with Spinal Muscular Atrophy on 7th November 2020 by NUH. This rare genetic disorder has resulted in gross motor delay that I've noticed since he was 6-7months old. Currently, he's not able to stand or walk. Due to the nature of this genetic disorder (muscle wasting disease), his muscles will become weaker and his health will deteriorate resulting in difficulty of swallowing, eating, drinking and even breathing. This will eventually lead to other complications such as lung infection.
At this point, doctors from NUH gave a couple of options and mentioned "Zolgensma" (manufactured by Novartis FDA approved). This is a one-time genetic replacement therapy that has to be done before the child is 2 years old.This treatment introduces the missing gene to Rayyan's body with hopes that his cells will then be able to start producing SMN protein by themselves. It's a one-time treatment, hopefully to provide Rayyan the ability to survive with minimal deterioration. However, the astronomical cost of Zolgensma is posing a huge challenge. The cost of the dose is USD2.1 MILLION/SGD3.1 MILLION (total cost to rise SGD3.4 MILLION after taxes and other fees.
However, I'm left with 5 months to raise the remaining amount with the current sum accumulated as of today is SGD150,000 through a couple of crowdfunding platforms and FB/IG PAGE: #WISHFORRAYYAN which have been shared by many through social media. Small businesses are also coming forward to help raise the funds via their own platform.
As a mother who lost a child 6 years ago due to SID(Sudden Infant Death) at 4 months old. I'm hopeful that there's still humanity, empathy and sympathy towards humankind. Please hear my pleas and cries as a mother, also a Singapore citizen. I humbly am in need of your help through spreading awareness, contributions or donations. I've tried reaching out to various MPs/MSF and asked for help from the Rare Disease Fund but to no avail as of now. Berita Harian and Suria news have covered Rayyan's story as well. Therefore, I'd like to know if you could help me in any way possible. I'm at loss and desperate and at my wits end. I believe that a little kindness goes a long way and I hope you would consider my appeal for donors and help me help my baby for a life as close as to being normal.
Please do not hesitate to let me know if there's any other documents you might need. Thank you very much for taking your time to read and acknowledge my letter. I hope to hear from you soon.
Attached are some reference/links so that you can find out about my efforts for this fundraising.