Five family members afflicted by rare 'mystery' disease, two have died

A family in Kampung Anak Air, Kuantan, is grappling with the devastating effects of Spinocerebellar Ataxia (SCA), a rare genetic disorder that progressively impairs balance and motor control. Five members of the Rani family are currently affected by the condition.

Muhammad Ashrol Rani, 31, shared the heartbreaking reality that two of his family members have succumbed to the disease: his mother, Mek Nah Mamat, who died at 46, and his eldest sister, Hindun, at the age of 30. His other sister, Suriani (41), his younger brother, Abdul Halim (30), and his niece, Nor Hafizah Abdul Rahman (27), are now battling the progressive illness that affects the brain and spinal cord, leading to difficulties with balance, speech, and daily living.

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Suriani was attacked by the disease when she was 28, after giving birth to her first child, while my brother and niece have been suffering from SCA for about six to seven years.

Ashrol is now the sole caregiver for three family members afflicted with SCA, a burden that intensified after his father, Rani Abdul Rahman, passed away from colon cancer in 2013, just a week before his mother's death. "Suriani was attacked by the disease when she was 28, after giving birth to her first child, while my brother and niece have been suffering from SCA for about six to seven years," Ashrol explained.

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The disease has four stages. The initial symptom is that the patient unconsciously loses balance when walking. Their condition gradually deteriorates until they can no longer walk and are eventually bedridden.

He described the disease's progression through four stages, starting with a loss of balance while walking and gradually leading to immobility. Suriani is currently in the most critical stage, confined to bed and requiring full-time care. Abdul Halim and Nor Hafizah are in stage three, relying on wheelchairs but still able to feed themselves, though their condition deteriorates daily. Ashrol noted that there is currently no specific cure for SCA.

The family receives some financial aid, including RM1,500 from the Social Welfare Department (JKM) and RM500 from the Pahang Islamic Religious and Malay Customs Council (Muip), along with RM200 in monthly food vouchers. However, their needs are significant. Ashrol is seeking assistance from the Social Security Organization (PERKESO) for his sister, particularly for essential supplies like diapers and milk. The most urgent needs are a patient bed for Suriani, as her current bed is damaged, and a larger wheelchair for his niece, whose current one is no longer suitable for her weight. Ashrol is self-employed, selling beverages to manage his time flexibly for caregiving.

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The most urgent needs are a patient bed for my sister because the existing bed's railing is damaged, causing her to fall several times. Also, my niece's wheelchair is no longer suitable for her weight and requires a larger one.