$1m short: After losing one baby to rare disorder, this family is raising funds to save their second

After losing their first child to a rare genetic disease, a couple is now racing against time to raise the remaining $1 million they need to save their second child, who has been diagnosed with the same condition. 

Speaking to AsiaOne on Tuesday (March 24), Norhaziqah Rosli, 35, said although her 10-month-old son Faziq has yet to show any symptoms, the "fear is always there". 

When her late son Faris was diagnosed with Spinal Muscular Atrophy (SMA) in 2017, doctors told Norhaziqah and her husband, 37-year-old Rahman Rahim, to be "mentally prepared". 

At the time, gene therapy was not yet available and despite efforts, Faris died on June 24, 2022 before his sixth birthday. 

When she was expecting Faziq, her fourth child, she received the frightening news during her second trimester that he had SMA. 

Norhaziqah said doctors were already prepared to give Faziq the oral medication Risdiplam to delay the disease progression and he has been taking it since birth. He is also undergoing physiotherapy at National University Hospital (NUH). 

She added that Faziq has been responding well to the medication and is becoming increasingly active as he grows older. 

The one-time gene therapy, Zolgensma, is available in Singapore, but is not covered by insurance or government subsidies and costs around $2.4 million. 

A volunteer who heard about the situation helped launched a crowdfunding page on Ray of Hope on Jan 5 to help the couple raise funds. 

As of Tuesday afternoon, they have currently raised close to $1.6 million with the help of 25,024 donors. 

'Fear is always there'

Having gone through this once before with her late son, Norhaziqah is constantly weighed down by worries — including the question: "What if his symptoms appear before he manages to get treatment?"

"I hope that Faziq's body will stay strong until (then)," she said.

Although he has been on daily oral medication, it is not a cure and they "don't know when the symptoms will appear". 

She said: "Once the symptoms appear, he can go from being a healthy, active boy one second to (SMA) destroying your muscles quite quickly." 

Although her late son was too old by the time treatment was made available, Faziq still has time. 

"Please give Faziq a fighting chance that Faris never had," said Norhaziqah in tears. 

"I hope everybody could come together to come forward and help because I cannot be doing it alone." 

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esther.lam@asiaone.com