Open your mouth wide: Kaoirul feeding Aqif as Umi Umeera looks on.
PETALING JAYA: “Who will take care of Aqif when my husband and I are not around anymore?” asked Umi Umeera Mazlan, 30, a housewife whose four-year-old son Muhammad Aqif has a rare genetic skin disorder known as epidermolysis bullosa (EB).
Children with EB are sometimes called butterfly children because their skin is as fragile as the wings of a butterfly.
Umi Umeera said that she worries about who will care for Aqif when she’s not around anymore, given that the disease, which causes Aqif’s skin to blister and tear even at the lightest touch, is lifelong and there is no known cure.
“I have three children who have EB, two of whom have passed away,” she said, adding that they had lived only for a few weeks.
“When Aqif was younger, his foot was not deformed and it had all five toes.
“But he had an infection on the foot when he was three months old. When we opened up his bandages, we saw that his right foot was infected,” she said, adding that he had to be hospitalised and he now no longer has his right foot.
Moreover, while other children are running and romping around freely at the age of four, Aqif has only the muscular strength to roll over on his back.
“Even when he is eating, sometimes he has to lie down as he cannot sit upright on his own,” Umi Umeera said.
Umi Umeera and her husband, Kaoirul Anuar, 36, had to make lifestyle changes to manage Aqif’s skin condition.
“Facilities in the house have to be modified, everything has to be very clean. We use silk to wrap his wounds, and it has to be of good quality.
“If I can, I would like to make a special chair for him to support his back. I can design it but I don’t know who to approach to make that chair a reality,” said Kaoirul, who works as a technician.
“When we go out we have to take him out on a stroller. But all the strollers in the shops are for babies. We want to get him a stroller that helps him sit upright, and that needs to be bigger so that it’s more comfortable for him,” said Umi Umeera.
The parents also face challenges not just in terms of fulfilling physical needs, but also in the psychosocial and educational aspects of raising their child.
“Sometimes he ‘threatens’ us by beating his own body and hurting himself. That’s how he gets his own way,” Kaoirul said.
“We are also thinking of sending him to preschool next year, but we would probably engage a private teacher or send him to the teacher’s place,” Umi Umeera said, as going to school may raise a number of complications.
Despite the many lifestyle decisions that have to be considered to accommodate Aqif, his parents affirmed that he is like any other four-year-old.
“He is a clever kid, he can read and write. When he stays at home, he loves to watch Upin & Ipin.
“He is a big fan of the show, and we hope that he can ‘meet’ them one day,” said Umi Umeera, referring to the title characters of the cartoon show.
Aqif’s parents shared that what helped them raise up a child with a rare disease is a strong support network.
“When you are facing something like this, you shouldn’t hide, you need to tell people,” Kaoirul said.
The family gets support from their own parents and other family members, even with practical needs like getting diapers.
They also said that they attend training sessions, and also share their challenges with other families facing the same situation, whom they met through doctors and the Debra Malaysia network.
“I pray really hard that God gives Aqif good health, and for God to grant us strength. I have to marshal all my strength and spirit to raise Aqif. If I don’t do so, I wouldn’t be able to take care of him,” said Umi Umeera.
