Parents seek donation for son with Pfeiffer Syndrome

KOTA BHARU – A housewife is seeking donations from the public to ease her financial burden and to enable her to continue treatment for her nine-month-old son who is diagnosed with Pfeiffer syndrome (a rare genetic disorder that affects the shape of a baby’s head and face).

Nor Akma Aini Azmee, 24, said that her son Muhammad Hafiy Affan Mohd Hasif’s condition was diagnosed when he was only two months old where had to undergo surgery on his eyelids to prevent eyeballs from falling out of the sockets when he was barely two months old.

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She said that her son was born like any other normal baby at Raja Perempuan Zainab II Hospital, but was later categorised as a disabled person due to global development delay (GDD) which causes abnormalities on face, skull and with no holes in his ears.

“Concerned, I took Muhammad Hafiy Affan to the hospital for further examination before he was referred to the Universiti Malaya Medical Center (UMMC) for a consultation with a specialist.

“After the doctor confirmed my son’s condition, he had to undergo another surgery to ease his breathing,” she told reporters when met at her house in Kampung Tebing Tinggi, Pengkalan Chepa here today.

Nor Akma Aini said it was even more heartbreaking when her son had to undergo a surgery to insert a shunt or tube to take out fluid out of his brain two months later, when he was only four months old.

She said that it is likely that her son will need to undergo several more surgeries including on the head and ears for his health development, but that is still in the discussion stage as Muhammad Hafiy Affan has yet to turn one.

“He needs about RM1,500 for his treatment and other expenses including travel cost from Kelantan to UMMC and daily necessities. He also needs to change the tube to remove his mucus costing RM250 per month.

“Previously, I used to earn an income by sewing clothes, but I had to quit to focus on my son as he needs to be monitored constantly. Now, we are solely depending on my husband, Mohd Hasif Mohd Hasb’s income who is earning about RM500 a month,” she said.

She added that they had to borrow from relatives to cover her son’s expenses, and her application for welfare assistance from the Social Welfare Department has been rejected.

Earlier, Social Volunteers and Welfare Club Media and Communications chief Akidi Hamidi visited the family and handed over cash donations to ease their burden.

Those wishing to donate can call Mohd Hasif at 014-8423723 or bank in their contributions to Nor Akma Aini Azmee’s Maybank account at 1530 1110 7154.

— BERNAMA