'Thank you for believing in our little boy': SMA fundraiser for baby Matthias closes with S$1.78 million raised

The fundraiser that was launched to help nine-month-old baby Matthias with Spinal Muscular Atrophy (SMA) receive urgent gene therapy has closed after reaching its goal.

Checks by Mothership on Jul. 31 showed that the campaign, which started on Jul. 24, was 100 per cent completed.

A campaign update stated that thanks to the community’s generous support through the crowdfunding campaign, together with the funds secured by the family, the full amount needed for Matthias to receive gene therapy Zolgensma has been met.

A rare genetic disease, SMA destroys motor neurons and weakens muscles.

"We have therefore stopped accepting any further donations, and the campaign closed at S$1,780,569.02 instead of the original goal of S$2,440,451.40," it read.

Baby Matthias is the third child of nurses Yun Hann, 34, and Benjamin, 36, who never thought their baby could have a genetic disorder.

Their two other children aged four and six are completely healthy.

As of Jul. 28, they raised over S$904,000.

Having previously donated to Ginny and Faziq's fundraisers previously, they knew the amount would be "astronomical".

Whole new meaning of community: Couple

Expressing their gratitude in a Jul. 31 Instagram post, the couple said the past three weeks had opened their eyes to a whole new meaning of community.

It's hard to find the words, the post read.

"All we know is this: without every prayer, every dollar, every share, every encouraging message, every act of kindness, and every cheerful comment, we truly don't know how we would have made it to today," it added.

The couple said: "With hearts full of gratitude, we want to share that, together, we have raised the remaining funds needed for Matthias' gene therapy."

They added that they are deeply humbled by the love that has surrounded the family.

"From friends and family, to colleagues, classmates and teachers, strangers who became friends, and even little children who gave from their pocket money—you have carried us through the hardest season of our lives," the post read.

It added: "Thank you for believing in our little boy, for carrying us when we didn’t have the strength to carry ourselves, and for standing with our family every step of the way."

"From the bottom of our hearts, thank you. We will never forget your kindness."

Type 2 SMA

Speaking to Mothership, the couple previously said that at seven months, Matthias' legs started to get increasingly "floppy" when they carried him in a standing position.

At first, they dismissed it as an effect of his size and personality.

Yun Hann is a nurse in the National Centre for Infectious Disease and Benjamin works in Tan Tock Seng Hospital.

However, they realised something was not right when he began to regress even further the next month.

At seven months, Matthias struggled to prop himself up on his elbows while lying on his stomach — a move he could do easily just a month before.

By the eighth month, he could not do it at all.

"That was the biggest red flag," Yun Hann said.

Needs treatment quickly

After reading Mothership's previous reports on babies Ginny and Faziq, both of whom were diagnosed with SMA, they thought these two babies' symptoms matched what they were seeing in Matthias.

When they brought Matthias to get tested at a hospital on Jul. 13, their worst fears were confirmed. He was diagnosed with Type 2 SMA.

As in the cases of Ginny and Faziq, the doctors told the couple that their son urgently needed Zolgensma.

The one-time gene therapy that replaces the faulty gene with a new, working copy, has been shown to stop the disease progression with just one dose.

However, it is priced at S$2.4 million and is unsubsidised by the government.

The doctors recommended that Matthias receive the treatment before he turns 12 months old.

The longer the delay, the greater the damage to their son's neurons — an effect that is likely irreversible.

Their hope is for Matthias to get Zolgensma as soon as possible so he can grow well and have a good future.

'Takes a village to raise a child'

Benjamin also highlighted to Mothership the support he and Yun Hann have been "very blessed" to receive.

Both of them have continued to work full-time, taking leave only on days they need to bring Matthias to the hospital for therapy.

Their parents help out with Matthias's physiotherapy in the daytime, and also help ferry them to medical appointments.

Yun Hann choked up when she previously talked about the compassion their bosses, friends, and family members have shown.

"Like the saying goes, it takes a village to raise a child," Benjamin added.