What happened to Baby Faziq? 

Baby Faziq was diagnosed at birth with severe form of Spinal Muscular Atrophy (SMA), a rare genetic condition that causes muscles to weaken over time. SMA affects the nerves that control movement, and without timely treatment, the damage cannot be reversed. As the condition progresses, even basic functions like breathing and swallowing can become difficult.

Since birth, Faziq has been on a daily medication called Risdiplam, which helps slow the progression of the condition. With this treatment, he has continued to gain motor milestones, though mild weakness remains. However, Risdiplam is not a cure and must be taken long-term to maintain muscle strength.

Risdiplam currently costs about SGD 4,800 per month at Faziq’s dosage. As he grows, this is expected to increase to around  SGD 12,000 per month, placing increasing financial strain on the family.

Doctors have therefore recommended Zolgensma, a one-time gene therapy that addresses the root cause of SMA by replacing the missing gene. When given early, it offers the best chance to stop further muscle damage and preserve the strength Faziq has today.

However, Zolgensma costs SGD 2,397,300 and is not subsidised or covered under Singapore’s Rare Disease Fund. For Faziq, time matters deeply. Every day without treatment risks further irreversible muscle loss.

While the family works to raise funds, Risdiplam remains a temporary measure. Zolgensma represents Faziq’s best chance at life beyond this diagnosis.

How can you help? 

Due to the urgency of Faziq’s condition, his parents started him on oral Risdiplam to slow the progression of the disease while they raise funds for his definitive treatment, Zolgensma.

Zolgensma costs SGD 2,397,300, a sum far beyond what Faziq’s family can afford. They hope to raise this amount as soon as possible so that Faziq can receive treatment before further irreversible muscle damage occurs.

100% of donations will be paid directly to the hospital, under the supervision of Ray of Hope and subject to the deduction of payment processing charges imposed by third party payment service providers.

A message from Faziq’s parents: 

When our baby Faziq was diagnosed with Spinal Muscular Atrophy (SMA) through newborn screening, we were devastated — but also grateful, because he was still asymptomatic. He still had time.

SMA is a rare genetic disease that destroys motor neurons, the cells that control movement, swallowing, and breathing. Once symptoms begin, the damage cannot be undone. Today, there is a window of hope: a one-time gene therapy called Zolgensma that can halt the disease before it progresses. It is most effective when given early, Faziq still has that chance.

Faziq’s late brother, Faris, also had SMA. He was bright and full of joy. When he was diagnosed in 2017, gene therapy was not yet available. Despite every effort, Faris passed away before his sixth birthday, on 24 June 2022.

Faris’ illness showed us how devastating SMA can be when diagnosis comes without access to effective treatment.

We are racing against time to raise over SGD 2,397,300, the cost of Zolgensma, which is not covered by insurance.

Your support can give our baby Faziq the chance that Faris never had.

At a cost far beyond what our family can manage, we are reaching out to the wider community for help. We know this is an immense and ambitious appeal, but as parents, we cannot give up when our son’s life is at stake.

Every donation and every share brings our son closer to the treatment he urgently needs. No amount is too small, and we are deeply grateful for any support and for helping us share Faziq’s story with others.

If you know of any organisations, communities, or sponsors who may be willing to support Faziq’s treatment, we would be grateful if you could reach out to us at hopeforfaziq.rayofhope@gmail.com.

Yours,

Norhaziqah and Rahman

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From Ray of Hope 

Baby Faziq’s campaign has been verified by Ray of Hope case managers. We have sighted doctors’ letters outlining the recommended treatment options and have verified the information with Faziq’s treating physician.

Donations made towards the first SGD 4,800 of the campaign will go towards funding Risdiplam. Donations made thereafter will contribute towards the purchase of Zolgensma.

Your support will go directly towards Faziq’s treatment and care. 100% of donations will be used for his medical treatment, subject to the deduction of payment processing charges imposed by third party payment service providers.

Ray of Hope Team

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FAQ

We understand donors may have questions. Below are some commonly asked ones.

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

Ray of Hope receives the cost of treatment directly from the hospital. As of April 2023, Zolgensma has been registered with Health Sciences Authority (HSA), bringing the cost down to SGD 2,397,300.

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

The donations made through the campaign page will be held by Ray of Hope. Ray of Hope will then pay the hospital directly for the cost of treatment.

What happens if there are insufficient funds for Faziq’ treatment? 

Ray of Hope will provide an option for refunds to all donors within a reasonable timeframe, minus any administrative costs incurred during the refund process. These admin costs are from the payment gateway, not Ray of Hope.

What happens if Faziq passes on before receiving the treatment? 

1. If funds have not been transferred to the hospital for the treatment, Ray of Hope will provide an option for refunds to all donors within a reasonable timeframe, minus any administrative costs incurred during the refund process. These admin costs are from the payment gateway, not Ray of Hope.
2. If funds have already been transferred to the hospital. Ray of Hope will not be able to process any refunds.

How can I donate?

All donations shall be made via this campaign page which gives you the option to donate via Credit Card or via Paynow by scanning the unique QR code generated for the campaign.

Please do not donate directly to ROH’s UEN via Paynow, as we will not be able  to track your donations to the specific campaign.

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

Only the Stripe fee is charged to the campaign. This is 1.8% in addition to the campaign’s target amount. 

If you wish, you may add an optional donation to Ray of Hope at checkout to help us continue supporting children like Faziq.