Source: Ray of Hope
An MS News reader recently reached out via Instagram to share the story of nine-month-old Matthias, a Singaporean baby who has been diagnosed with Spinal Muscular Atrophy (SMA) Type 2.
Matthias’ parents are now in a race against time to raise S$2.4 million for a potentially life-saving treatment before he turns one. This leaves them with just three months to meet the fundraising target.
According to the verified Ray of Hope crowdfunding campaign, the treatment offers Matthias the best chance of preserving his motor function and improving his quality of life.
However, doctors must administer it before he turns 12 months old.
Source: Ray of Hope
The fundraiser, titled ‘Help Baby Matthias Receive Urgent Gene Therapy for SMA’, documents the family’s journey after receiving the diagnosis.
According to the fundraiser, SMA is a rare genetic condition that causes progressive muscle weakness. In just two months, SMA has significantly weakened Matthias’ muscles.
He can no longer hold his head up during tummy time, struggles to sit upright, and now needs support for movements that once came naturally.
According to the campaign page, donations will go towards funding Matthias’ treatment, giving him the best possible chance of a healthier future.
The treatment, Zolgensma, a one-time gene therapy, costs S$2,397,300, an amount that the family is unable to afford.
“We are doing everything we can and have explored every avenue available to us. Even with our own contributions, the cost remains beyond our means,” said Matthias’ parents.
“That is why we are turning to the community for help,” they added.
The family has also been sharing updates via @walkwithmatthias on Instagram, where supporters can follow Matthias’ journey.
Those who wish to support Matthias can do so through the verified Ray of Hope campaign or by sharing his story to help the appeal reach more people.
Also read: 5-month-old S’pore baby with rare genetic condition needs S$2.4M for life-saving treatment
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Featured image adapted from Ray of Hope.