Update from Ray of Hope (4 November 2022)

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.”

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Update from Zayn’s parents

Due to the urgency of Zayn’s condition, his parents have ordered the Risdiplam drug. The cost of the drug is SGD 15,167.50.

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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 walkwithzayn@gmail.com

Thank you for your prayers, help and support.

Fighting on.

Zayn, Syahirah & Nabeel

From Ray of Hope

Baby Zayn’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 Baby Zayn.

Donors who give to the first SGD 15,167.50 of the campaign will be donating to fund Risdiplam. Donors who give after the SGD 15,167.50 target has been reached will be contributing to the purchase of Zolgensma. 

Please donate generously to give Baby Zayn hope and a second chance at life. 100% of your donation will be used for his treatments.

Ray of Hope Team

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FAQ

There was a similar campaign on Ray of Hope where the cost of Zolgensma was lower. Why is it higher this time?

For both campaigns, Ray of Hope receives the cost of treatment directly from the hospital. We sighted the doctor’s letter and the estimated cost for this campaign is approximately SGD 3 million dollars. 

How will the funds to the campaign be used and where are the funds going?

The donations made through the campaign page go directly to Ray of Hope. 

Ray of Hope will handle the donations received and pay for the cost of treatments.

What happens if we are unable to raise sufficient funds for Baby Zayn’s treatments?

In the unfortunate case that we are unable to raise sufficient funds for Zayn’s treatments, Ray of Hope will provide an option for refunds to all donors within a reasonable timeframe, minus any administrative costs that were incurred during the refund process. These admin costs are from the payment gateway and not from Ray of Hope.

What happens if the funds are raised, but Baby Zayn passes on before receiving the treatments?

In this unfortunate situation, if the funds have not been transferred to the hospital for the respective treatments, Ray of Hope will provide an option for refunds to donors within a reasonable timeframe, minus any administrative costs that were incurred during the refund process. These admin costs are from the payment gateway and not from Ray of Hope.

How can I donate?

You can donate via this campaign page and checkout seamlessly using your credit card or PayNow. 

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 that we incur so that 100% of your donation goes to the campaigns. These fees can come up to 3% of the overall campaign target. At the checkout page, donors can give to Ray of Hope so we can continue to help more beneficiaries like Baby Zayn. This donation is optional, and if the donor chooses not to donate to Ray of Hope, we will still pass on 100% of the donations to the campaign.