Crowdfunding effort to raise $3million launched to help 14-month-old boy fight rare genetic condition

SINGAPORE: The parents of a 14-month-old baby named Shamel are appealing to people’s hearts to help raise money for medical treatment to fight a rare genetic condition he was diagnosed with last November.

The cost for Zolgensma, a one-time gene therapy to treat Shamel’s type 2 Spinal Muscular Atrophy (SMA) costs approximately S$3,016,229.20.

Shamel, the only son of Achintha and Dula, showed floppiness and low muscle tone early on, despite being a bright and happy baby. “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,” his parents wrote on the crowdfunding page on the Ray of Hope website.

They explain his disease as “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.”

Zolgensma, which Shamel needs before he turns two, will replace the function of the missing or non-working Survival Motor Neurone (SMN1) gene, they added.

Otherwise, he will experience further debilitation that will lead to complete immobility and weakness.

At this point, with 16 days left in the crowdfunding campaign, 49 per cent of the amount, S$1,491,880, has been raised, with over 10,000 donors giving amounts from S$10 and higher.

“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.”

This is not the first time a child in Singapore has suffered from SMA.

In 2021, a little boy named Devdan Devaraj was diagnosed with Type 2 SMA, and his parents launched a campaign to raise funds as well. Over 30,000 donors have opened their hearts and wallets, and helped raise the funds for his medical treatment.

Today, Devaraj appears to be healthy and thriving, and in a video from a few days ago on his Instagram account, he accepted his parents challenge to ride a tricycle at Decathlon from one side to another.

The fundraiser for Shamel was also shared on Devdan’s IG sometime ago.

People who wish to donate to Shamel’s treatment may click on this link, or see his IG account to learn more.

/TISG

Crowdfunding goal for toddler with rare disease reached, NUH prepares for little Devdan’s treatment