S$2.4M Needed To Give Baby With Muscular Disorder A Chance At Living
Welcoming a healthy baby into the world is a dream come true for first-time parents, however, some don’t have it that easy.
A couple in Singapore made the heartbreaking discovery that their baby boy has Spinal Muscular Atrophy (SMA) Type 1 just two months after he was born.
Source: Hope For Baby Lucas on Facebook
The treatment for baby Lucas — a gene therapy called Zolgensma — comes up to a staggering S$2.4 million.
As such, his parents are hoping to raise funds and give him a chance at life.
Baby diagnosed with spinal muscular disorder at 2 months old
The campaign page on Ray Of Hope tells us more about Lucas’ current battle.
The baby’s parents shared that they first suspected that something was wrong when he was two months old.
“Our infant son didn’t seem to enjoy using his legs. He didn’t stretch or kick,” they said.
Source: Hope For Baby Lucas on Facebook
After noticing that their child wasn’t “as active as other babies”, they decided to send him for a check-up at nine weeks old.
Unfortunately, doctors diagnosed baby Lucas with SMA Type 1 on 26 June 2023.
If gone untreated, the disease will progressively weaken and damage his muscles, eventually affecting the brain and spinal cord.
His parents shared that Lucas currently depends on two types of medical support:
- A nose mask connected to a ventilator and;
- A feeding tube inserted into his nose
However, the two-month-old needs way more than that to get a fair chance at life.
Parents need funds for baby to receive S$2.4 million treatment
The treatment recommended for Lucas and other babies with the disease is known as the world’s most expensive medicine — priced at S$2.4 million.
As such, his parents have turned to crowdfunding to help with the cost of his treatment.
Source: Ray Of Hope
Zolgensma targets the genetic root cause of SMA by replacing the function of the missing or non-working survival motor neuron 1 (SMN1) gene.
If successful, the treatment can stop the disease from further damaging Lucas’ muscles and sustain the remaining muscle function needed to survive.
As of the time of writing, the campaign has raised over S$97,000 of the target so far.
Accepting donations till 30 Aug
If you wish to donate, you can do so on the campaign page here.
The website states that all donations made through the page will go directly to Ray Of Hope — who will handle the funds and pay the cost of the treatments.
Otherwise, those who want to keep up with baby Lucas’ tough fight can follow his Instagram and Facebook page.
We wish baby Lucas and his parents the best on their journey. May they receive all the help they need to give him a shot at living a beautiful life.
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Featured image adapted from Hope For Baby Lucas on Facebook and Facebook.
