Born with a rare genetic disorder, three-month-old baby Lucas requires urgent treatment with the "world's most expensive drug" – Zolgensma.

The drug is priced at S$2.4 million per pop, but if Lucas doesn't receive the gene therapy, he might not live past his second birthday.

Diagnosed with Spinal Muscular Atrophy

In an email sent to Mothership, Vicky, a friend of Lucas's parents Andy Wang and Lavin Chong, shared that Lucas was born with Spinal Muscular Atrophy (SMA) Type 1.

SMA is a severe genetic disorder that progressively weakens muscles, affecting both the brain and spinal cord.

Type 1 SMA is the most severe form of the disorder, which hinders the ability to sit, crawl, stand, walk, swallow and breathe independently.

Chong and Wang explained that as first-time parents, they looked out for joyful milestones, waiting for Lucas to stretch out and move his arms and legs more freely.

However, when Lucas was two months old, they knew something was amiss when they observed that Lucas didn't stretch and kick and seemed less active then other babies.

In addition, Lucas's head hung to the side when he was tired.

By his ninth week, Chong and Wang decided to take Lucas down to the doctor.

After a flurry of tests, the parents had received the heartbreaking news on Jun. 26.

What was once expected to be a lifetime of joy, was now reduced to two short years.

Needs urgent medical care

Currently, Lucas has been put on two different types of medical support.

The first is a nose mask which is connected to a ventilator. The straps have to be pulled taut to secure the mask, pressing into the baby's delicate skin.

The second is a feeding tube, painfully inserted into the baby's nose so that he can drink milk.

Lucas has also been prescribed a temporary medication, Risdiplam, but one bottle only lasts 64 days and costs S$9,000.

However, there is another medication: Zolgensma.

It is designed to target the genetic root cause of SMA by replacing the function of the missing or nonworking survival motor neuron gene.

The treatment will stop SMA from further damaging Lucas's muscles and sustain the remaining muscle function needed to survive.

The drug, however, comes at a hefty cost.

Dubbed "the world's most expensive medicine", Zolgensma is priced at S$2.4 million.

The drug is not subsidised by the government, nor is SMA treatment covered by the rare Disease Fund in Singapore.

Thus, patients have to fund the treatment independently.

Crowdfunding campaign

Due to the urgency of Lucas' condition, Chong and Wang have ordered Risdiplam while setting up a crowdfunding campaign under Ray of Hope to raise funds for Zolgensma, as the staggering sum is beyond what they can afford.

The first S$9,000 received by the campaign will go towards funding the Risdiplam. Subsequent amounts will go towards purchasing Zolgensma.

"Each donation and act of sharing brings us closer to securing the necessary treatment Lucas urgently needs. Your generous contribution, regardless of the amount, holds the power to make a life-changing difference for our baby," said the couple.

As of Jul. 16, S$1,753,934 has been raised by 14,235 donors.

The funds will be paid directly to the hospital under the supervision of Ray of Hope.

The couple also run an Instagram and Facebook page for updates on Lucas' progress.

"From our hearts, we express our sincere gratitude for your consideration, support, and the hope you offer our son. Every contribution, be it financial or by spreading the word, brings us closer to giving Lucas a chance to experience a full and vibrant life. Thank you for being a beacon of hope in our darkest hour."

You can donate to the campaign here.

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