S'pore couple has under a month to raise S$3 million for life-saving treatment of son’s rare genetic condition

Shamel is diagnosed with Type 2 Spinal Muscular Atrophy and needs to be treated before he turns 2.

Fiona Tan | March 15, 2023, 02:02 PM

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It's never easy when your child falls sick.

Your heart breaks when you know your child may never walk.

And when you realise that you might lose your child forever, words cannot describe the despair you feel.

Unable to walk and rejected food

Shamel Adrian is a cheerful baby boy.

As he grew older, his parents, Achintha Pilapitiya and Dulanjali Wakwella, watched him clear his motor milestones — from lying on his stomach, crawling and then sitting up with support.

He is their first child, and they thought it wouldn't be long before he could walk.

But at 12 months old, when Shamel's peers started taking their first steps, he could barely sit up on his own, let alone be on his feet.

His parents were anxious but only thought he was a slow bloomer and hoped he would eventually walk.

Then they started noticing Shamel having difficulty maintaining a sitting posture. The boy could only sit briefly before falling face first or flopping sideways.

Video from @hope_for_shamel/Instagram.

They began to suspect that something was "seriously wrong", and their worst fears came true when Shamel began refusing to eat.

He became weaker and started losing weight, and they didn't know what to do.

Diagnosed on Nov. 15, 2022

Shamel's parents told Mothership the family went to several doctors to find out what was happening to their son.

They received Shamel's diagnosis on Nov. 15, 2022.

"It felt like our world fell apart", he said

Shamel was diagnosed with Type 2 Spinal Muscular Atrophy (SMA2).

The odds were 1.9 in 100,000

SMA2 is extremely rare, occurring in only about 1.9 in every 100,000 newborn babies.

The genetic neuromuscular disorder causes a child's muscles to weaken progressively from as early as six months of age.

They will lose their ability to sit, crawl, stand, walk, eat, and eventually stop breathing.

Even if the condition is managed, the probability of living to 25 years old is only 70 per cent.

Condition deteriorating faster than expected

There was more bad news.

A month after his diagnosis, Shamel was still not eating well and had to be admitted to the hospital.

They learnt that Shamel has difficulty swallowing, a sign that his condition is deteriorating faster than expected.

Doctors said it would be too risky to feed Shamel normally as he could choke on his food.

The boy had to be nasal-fed and fitted with a nasogastric (NG) tube, a long medical catheter inserted through his nose and connected to the stomach.

S$3 million for life-saving drug

Despite the hardship he's been put through, Shamel remains cheerful, curious, and eager to explore and play.

Achintha and Dulanjali refused to despair, trawling the internet to find ways to save their son.

Dulanjali said:

"Shamel is our biggest blessing [...] we can never love him less and the only thing we discover each day is that we love him more than yesterday [...] when we hold him in our arms, we find strength to live, fight and in Shamel we find our purpose of life."

This was when they decided on Zolgensma, one of the three treatment options that the doctors recommended.

Zolgensma is a one-time gene therapy that can treat Shamel's condition by replacing the faulty gene responsible.

However, it comes with a hefty price tag of S$3 million, and the couple cannot afford it.

Achintha, an engineer, has been the family's sole breadwinner, as Dulanjali has to stay home to care for Shamel, who requires round-the-clock supervision due to his condition.

They need to raise funds quickly, as the treatment is only suitable for children under two years old.

Shamel is already 18 months old.

Exhausted every possible option

The couple spoke to their contacts, contacted other parents of children with SMA, and sought help from various organisations.

After exhausting every possible option and experiencing numerous rejections, they had no choice but to turn to crowdfunding platforms.

Appealing to the public to help them save their son, Achintha said:

"We know this is a big ask and achieving the target will be an arduous 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."

Still more than a million dollars away

Since December 2022, Shamel's campaign on Singapore-based crowdfunding charity Ray of Hope has raised almost S$1.5 million.

Image screenshot from Ray of Hope.

Including around S$200,000 raised separately, Shamel is still S$1.3 million short of getting the treatment he needs.

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A post shared by Hope for Shamel (@hope_for_shamel)

You can contribute to Shamel's treatment via Ray of Hope here.

Receive updates on Shamel here.

Top image from @hope_for_shamel/Instagram