Baby Faziq receives S$2.4 million treatment for rare genetic disease
- By Web Desk -
- Apr 27, 2026
Singapore: The family of baby Faziq, who suffers from Spinal Muscular Atrophy (SMA), has announced that he has successfully received the S$2.4 million Zolgensma gene therapy treatment.
“At this stage, we are focusing on his recovery and close monitoring,” the family shared on Instagram on April 24. “After the treatment, regular follow-ups, medications such as steroids, and blood tests are needed to ensure everything remains stable.”
In 2025, Faziq’s parents, Norhaziqah and Rahman, learned they were expecting their fourth child. However, during the second trimester, doctors informed them that Faziq had SMA—the same genetic condition that affected his older brother.
Faziq’s brother, Faris, was diagnosed with SMA in 2017 and passed away on June 24, 2022, despite extensive efforts to manage his condition.
“We were devastated,” the couple said in their fundraiser hosted on charity platform Ray of Hope. “But also grateful, because he was still asymptomatic. He still had time.”
SMA is a rare genetic disease that destroys motor neurons, the cells responsible for movement, swallowing, and breathing. Once symptoms appear, the damage is irreversible and there is currently no cure.
While treatments cannot fully cure the condition, options such as gene therapy and medications can help manage symptoms and significantly improve outcomes.
Since birth, Faziq has been on a daily medication called Risdiplam, which helps slow the progression of the disease. However, the drug is not a cure and must be taken long term. It currently costs about S$4,800 per month and is expected to rise to S$12,000 as he grows.
Although some treatment costs are covered by the hospital’s Medical Assistance Fund and Medifund, the family noted that these are temporary measures and do not eliminate the risk of irreversible muscle loss.
Doctors recommended Zolgensma, a one-time gene therapy that targets the root cause of SMA by replacing the missing gene. Often referred to as the world’s most expensive drug, it is priced at S$2,397,300 and is not subsidised under Singapore’s Rare Disease Fund.