M’sian Baby Suffering From Spinal Muscular Atrophy, Family Needs S$2.7 Million To Fund His Treatment

1-Year-Old Malaysian Baby Suffering From Spinal Muscular Atrophy

A baby in Malaysia was recently diagnosed with Spinal Muscular Atrophy (SMA) type 1, a rare genetic disease. The disease affects his muscles and his ability to breathe.

Image courtesy of Nadira Mohsin

While there is no cure, there are treatment options available. However, they are extremely costly.

His parents are seeking to raise RM 9 million (S$2.7 million) to fund his treatment. You can extend your help by donating here.

Spinal Muscular Atrophy is a rare genetic disease

Baby Athif, who recently turned one, was diagnosed with SMA type 1 shortly after birth. SMA is a rare genetic disease that affects muscles used for movement.

Image courtesy of Nadira Mohsin

As time passed, Athif’s muscles became weaker and he now relies on a breathing aid to survive.

The doctors informed his family that the disease has no cure. If he does not undergo treatment, it will be difficult for him to survive past the age of two.

Treatment costs S$2.91 million

The most effective treatment would be to opt for Zolgensma, a one-time gene therapy that may halt and potentially reverse the effects of the disease.

Unfortunately, the treatment is expensive and costs about RM 9.72 million (S$2.91 million)

As such, the family has opted for a temporary treatment with Risdiplam, a daily medication that costs RM40,400 (S$7,830) per bottle.

Furthermore, each bottle of medication only lasts for 50 days.

Family seeking donations from the public

In order to fund Athif’s treatment, the family has set up a crowdfunding campaign on Give.asia in hopes that people will give their support to save the baby’s life.

The family is hoping to raise RM 9 million (S$2.7 million) to cover the costs of the Zolgensma therapy and other related expenses,

Every donation, no matter how small, brings us closer to our goal and gives us hope that our baby can live a long and healthy life.

At the time of writing, the family has raised slightly more than RM250,000 (S$75,264), with an additional RM100,000 (S$30,105) raised offline.

It is truly unfortunate that Athif has to go through such pain at an extremely young age.

If you would like to support Athif and his family, you can send in your donations on Give.asia.

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Featured image courtesy of Nadira Mohsin.