The parents of a 14-month-old child who is suffering from Spinal Muscular Atrophy (SMA), have started a fundraiser on Ray of Hope to crowdfund treatment for their sick baby, according to MustShareNews.
The treatment costs about SGD$3 million, and they have raised about S$148,609 so far.
Here is what they said on Ray of Hope
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 [email protected] 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.
Shamel, Achintha and Dula