The parents of Zayn Bin Nabeel Abdat, a baby suffering from Spinal Muscular Atrophy (SMA) Type 1, previously started a crowdfunding campaign to raise money for their infant’s $3 million treatment for the disease.
The fundraiser managed to raise $1.5 million from their family, friends and the public, before an anonymous donor donated the remaining shortfall of $1.5 million for them to hit their $3 million target.
Former Member of Parliament Amrin Amin shed light on the donor’s generous donation.
Amrin Amin’s update
This is an update on Baby Zayn.
Baby Zayn was given Zolgensma, a gene therapy medication used to treat spinal muscular atrophy, on Tues (29 Nov).
I was in touch with Zayn’s dad, Nabeel, today. Baby Zayn is responding well. Let’s pray for his recovery.
Recently in Sep, I shared about Baby Zayn. Zayn has a rare neuromuscular disease (SMA Type 1). Treatment cost $3 million. If untreated, the muscles weaken, movement and breathing will soon stop.
Nabeel’s updates fill me with hope and inspiration. Nabeel and family raised about $1.5 million with your help and friends.
The shortfall – Nabeel shared an anonymous donor topped up about $1.5 million so Baby Zayn can get treated. This is very touching. Such kindness reminds us there’s still so much compassion and positivity in our community, even during this difficult time.
Nabeel asked me to convey his heartfelt thanks to all of you for walking this journey with his family.
Baby Zayn’s fundraiser
At 5 weeks old, Zayn was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 – a genetic neuromuscular disease that causes muscles to become weak. People with SMA lose a specific type of nerve cell in the spinal cord called motor neurons that control muscle movement. Without these motor neurons, the muscles will not be able to receive nerve signals that make muscles move.
SMA Type 1 – Symptoms appear at birth or within an infant’s first six months of life. Infants with SMA Type 1 have difficulty swallowing and sucking. They don’t meet typical milestones like holding up their heads or sitting. As muscles continue to weaken, children become more prone to respiratory infections and collapsed lungs. Most children with SMA Type 1 die before their second birthday, if left untreated.
We have been informed by doctors that the available treatment for Zayn is Zolgensma, a single dosage which would cost close to SGD 3 million and is a prescription gene therapy used to treat children less than 2 years old with Spinal Muscular Atrophy (SMA) and Risdiplam, a daily dosage drugs which cost SGD 15,167.50 per bottle (which lasts 64 days).
Given Zayn’s current condition, we are faced with the difficult decision by having to proceed with a temporary treatment of Risdiplam while working towards raising sufficient funds for Zolgensma treatment. While the amount of SGD 3 million is monumental to us, we are hopeful in working towards it as it gives our son the best chance of survival and a better quality of life growing up.
Follow us on instagram (@walkwithzayn) and Facebook (@Walk With Zayn) to stay updated on our journey. We would appreciate if you could share this fundraising link with your family and friends who might like to help us.
Should any of you may have any links to community groups, potential individual/ corporate sponsors or others who might be able to help, kindly reach out to us via email at [email protected]
Thank you for your prayers, help and support.
Fighting on.
Zayn, Syahirah & Nabeel
Update
Dear Donors,
We have good news to share. Baby Zayn’s campaign has received several large anonymous donations to reach the target goal of $3,015,167.50. Therefore Ray of Hope is closing the campaign before the target closing date at end November 2022.
The hospital is in the process of getting Zolgensma to Singapore for Baby Zayn. We will update donors again on when Baby Zayn will receive the treatment.
Here’s a thank you note from Baby Zayn’s parents Nabeel and Syahirah.
“We would like to humbly thank the community that has come together from different walks of life to help Baby Zayn in his journey. We are very touched by the spontaneity of how the community responds to Baby Zayn’s story.
A million thank you will never be enough for your kindness and generosity. The journey to recovery will be long, but you have given us hope that Baby Zayn can grow up and lead a healthy life knowing that the community has come together to support him. Thank you from the bottom of our hearts.”
Source: Ray of Hope and Amrin Amin on Facebook