Mother Faces New Battle with SMA After Losing Her Son

In a heart-wrenching journey, Norhaziqah Rosli, a mother from Singapore, is facing the prospect of raising her fourth child, Faziq, who has been diagnosed with spinal muscular atrophy (SMA). This comes just a year after she lost her second child, Faris, to the same rare genetic condition. The emotional toll of such a diagnosis is compounded by the financial burden of treatment, which can reach upwards of S$2.3 million.

Norhaziqah’s ordeal began during her pregnancy with Faziq when her obstetrician-gynaecologist posed an unsettling question: “Do you want to keep the baby?” The results of her amniocentesis revealed that her unborn child tested positive for SMA, a progressive disease that causes muscle weakness and deterioration. “It was as if my whole life was sinking again,” she reflected, recalling the devastating impact of losing Faris in June 2022 at just six years old.

First Encounter with Spinal Muscular Atrophy

Norhaziqah’s first experience with SMA occurred in early 2017 when she noticed that Faris was not meeting developmental milestones. Following a visit to a paediatrician, genetic testing confirmed he had type 1 SMA, a diagnosis that usually carries a life expectancy of less than two years without treatment. “I was shocked. I didn’t know what to do,” she admitted. Despite the challenges, she dedicated herself to ensuring Faris lived with dignity, managing his care while also raising their older son, Farrell.

The family endured frequent hospital visits and emergencies, with Norhaziqah and her husband taking turns to stay overnight in the intensive care unit. The support from her mother was invaluable during these trying times, providing emotional and practical assistance. In July 2018, Norhaziqah welcomed a healthy daughter, Fasha, which briefly alleviated her fears of further illness in her family.

Holding on to Hope

With the birth of Faziq in June 2025, Norhaziqah faced renewed anxiety. The amniocentesis results confirmed her worst fears. “I was so shocked that I couldn’t feel anything, like I was numb,” she said, grappling with the reality of having two children with SMA. Despite societal pressures and hurtful comments questioning her decision to have more children, she remained resolute in her belief that every child is a blessing.

Faziq, now seven months old, is referred to by Norhaziqah as her “miracle baby.” Unlike Faris, he has shown more stable development, aided by early access to treatment. Since birth, Faziq has been on a daily medication called risdiplam, which helps slow the progression of SMA. Currently, the medication costs approximately S$4,800 per month. Norhaziqah hopes to provide Faziq with a one-time gene therapy that targets the root cause of SMA, although this treatment is priced at over S$2.3 million and is not covered by Singapore’s Rare Disease Fund.

“Of course, the worst thoughts still cross my mind,” Norhaziqah acknowledged. “What if we don’t raise enough funds? What if he can’t get the medication in time?” Yet, she clings to hope, believing that there is a possibility of improvement for Faziq. Her journey illustrates the resilience of a mother’s love and the complex interplay of hope and fear in the face of adversity. As she navigates the challenges ahead, Norhaziqah remains determined to provide her children with the best life possible, guided by the belief that there is still good in their situation.