Parents Seek S$3 Million In Donations To Fund Baby’s Spinal Muscular Atrophy Treatment
A married couple is seeking donations to fund treatment for their 14-month-old boy who has Spinal Muscular Atrophy (SMA), a rare condition that makes him unable to eat, walk, or even breathe.
The treatment costs approximately S$3 million and can only be used before the baby turns two years old.
They have raised about S$148,000 so far.
Couple seeks donations for treatment
Shamel, who is 14 months old, started to show signs of floppiness and low muscle tone after he turned eight months old. He also stopped eating.
His parents suspected something was amiss when he missed his normal milestones. After sending him for tests, they discovered Shamel had SMA, which affects one in 10,000 people.
Treatment for SMA is Zolgensma, a gene therapy that costs around S$3 million. It helps to replace the missing gene caused by SMA.
Shamel requires the treatment before he turns two for it to be effective, meaning his parents have about 10 months to raise the necessary funds.
“Our simple wish for Shamel is that he can live a normal life,” they said. With Zolgensma, Shamel should be able to eat and walk normally.
They’ve started a campaign on Ray of Hope to raise the S$3 million (US$2.125 million) and have received approximately S$147,900 as of the time of writing.
Ray of Hope will make the payments directly to the hospital.
All parents want their children to live a normal life
Should Shamel’s parents not be able to raise the S$3 million, there will be an option for refunds.
However, if the funds have been transferred to the hospital, Ray of Hope won’t be able to process any refunds.
The best-case scenario, of course, is that Shamel’s parents raise the funds and get the Zolgensma.
After all, all parents simply wish for their children to live a normal life.
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Featured image adapted from Ray of Hope and @hope_for_shamel on Instagram.
