Help baby Shamel fight the rare condition

We suspected something was seriously wrong when our little angel Shamel showed signs of floppiness and low muscle tone. Although he was fully alert and happy, he was missing his motor milestones. Even at 1, when his peers started to walk, Shamel could not sit independently, crawl, stand or bear weight on his legs. He began to fall quickly and flop forward without control, even when seated — shortly after, he lost the ability to kick. 

As first-time parents, we could not understand why Shamel seemed hungry yet rejected his food. We now know that he has difficulties swallowing, and eating is hard for him. During this time, we also saw an apparent reduction in his food intake, progressively making him thinner and weaker. Then, on 15 November 2022, our hearts broke. After several tests, our 14-month-old baby was diagnosed with type 2 Spinal Muscular Atrophy (SMA).

SMA is a rare neuromuscular condition that causes muscles to become weak and damages the nerve cells in the brain and spinal cord. It leads to progressive muscular weakness and affects the ability to independently sit, crawl, stand, walk, swallow and even breathe. Shamel is currently in a position where he can only sit with support, and that too, not for long minutes. It is very hard for us as parents to see him struggle to move around and exhaust himself from trying to take a toy. Every child should be able to play. Without medication, further deterioration and eventual death of his motor neurones will lead him to total immobility and weakness. 

Despite this debilitating news, we hope that Shamel can live a life as normal as possible and run, walk and play with other kids. Shamel’s hope lies in Zolgensma, a one-time gene therapy acting on the gene by replacing the function of the missing or non-working Survival Motor Neurone (SMN1) gene. Shamel needs to receive Zolgensma before he turns 2. 

The cost of Zolgensma is USD 2.125 million/SGD 3 million (depending on the current exchange rate). We know this is a big ask and achieving the target will be an ardent task. But as his parents, we must try everything we can. Therefore, we are humbly turning towards the generous community for help securing the treatment for our baby Shamel. It will take more than a village to help Shamel, and no donation is too small. Nevertheless, there is hope for Shamel, and we thank you in advance for your generosity. 

We are most grateful to Ray of Hope for extending their help. As a crowdfunding charity, they will handle all the payments directly to the hospital, so you can be sure that the funds are going directly to Shamel’s treatment. In addition, Ray of Hope does not take a cut from the donations, and 100% of your donations will go to Shamel’s treatment. 

Please share this campaign with as many friends as possible. Should you know of any community, organisation or sponsor willing to support us, please do not hesitate to email us at hopeforshamel@gmail.com. Follow us on Instagram (@hope_for_shamel) and on Facebook ‘Hope for Shamel’, for updates on Shamel’s progress and his journey with SMA. 

May God bless you abundantly and we cannot thank you enough for your help and support.

Yours, 

Shamel, Achintha and Dula

******

From Ray of Hope

Shamel’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 him.

Donors who give to the first SGD 16,229.20 of the campaign will be donating to fund Risdiplam. Donors who give after the SGD 16,229.20 target has been reached will be contributing to the purchase of Zolgensma.

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

FAQ 

There was a similar campaign on Ray of Hope where the cost of Zolgensma was lower. So 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 3,016,229.20. 

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

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 there are insufficient funds for Shamel’s 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 Shamel 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 been transferred, ownership of funds is now with 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.

Kindly refrain from directly donating to ROH’s UEN via Paynow as we are unable to track your donations to the campaign you wish to donate.

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 we incur so that 100% of your donation goes to the campaigns. These fees can come up to 3% of the overall campaign target. 

However, as donors, you may choose to give to Ray of Hope so we can continue to help more beneficiaries like Shamel at the checkout page. This donation is optional.