Mother Shares Struggles Caring For Three Children With Spinal Muscular Atrophy

PASIR MAS, Feb 19 (Bernama) -- "A mother's love knows no bounds, leads to heaven," are words that perfectly describe the sacrifices of housewife and mother to three disabled children, Nurul Amirah Mohamad Napi, 41.

Nurul Amirah, who lives in Kampung Gaung, Tendong, said all three of her children are diagnosed with spinal muscular atrophy (SMA), a genetic disorder that causes muscles to become weak and waste away.

According to her, Nurul Amanda Safuan, 11, Mohamad Syahmi, 8, and Nurul Ariana, 6, were born healthy and lived a normal childhood. However, symptoms of the disease began to appear after they turned one.

"I first noticed changes in Nurul Amanda and Mohamad Syahmi when they were nearly two years old. They would often fall whenever they tried to stand, eventually losing the ability to walk.

"We sought treatment at Raja Perempuan Zainab II Hospital (HRPZ II), where doctors diagnosed them with stage two SMA. The same situation happened with my youngest child, Nurul Ariana, who has been unable to walk," she said when interviewed at her home today.

Nurul Amirah said caring for her children requires a lot of energy, as all three depend entirely on her, especially when her husband, Mohamad Safuan Abdullah, 40, is at work. 

"Every morning, my routine involves getting Nurul Amanda and Mohamad Syahmi ready for school at Sekolah Kebangsaan Othman Thalib and taking care of my youngest child, including feeding, bathing, and other tasks.

"It becomes even more challenging when my husband and I need to take all three children to appointments with specialist doctors at HRPZ II. Nurul Amanda and Nurul Ariana will sit in one wheelchair, while Mohamad Syahmi manages on his own," she said.

Nurul Amirah mentioned that she must allocate RM500 a month for her children's diapers from her husband's monthly income of RM1,000. 

"My three children do receive monthly assistance from the Social Welfare Department. Nurul Ariana receives RM200, whereas Nurul Amanda and Mohamad Syahmi receive RM150 each for school assistance, which is given every six months," she added.

Those who wish to ease the family’s burden can transfer the contribution to Nurul Amirah’s Bank Islam account 03027020890979 or contact her at 017-9595163.

-- BERNAMA