By Rosli Mansor Ahmad Razali
ULU KUANG, CHEMOR — Two siblings, Aina Afieyah, 9, and Muhamad Mikhail, 3, who suffer from a rare genetic skin condition known as Epidermolysis Bullosa (EB), or fragile skin syndrome, have drawn increasing attention from various quarters amid concern over the hardship they endure.
Region 5 Chairperson of the Lions Club of Perak Silver State, Dr Richard Ng, said the siblings’ story was deeply moving and prompted him to mobilise several clubs and associations to assist the family.
Among those involved are the Lions Club Silver State, Lions Club Branch Ipoh Rising Star, Lions Club of Chemor Perak, Pertubuhan Teduhan Kelana, the Perak Indian Muslim Association and the Perak Women Entrepreneurs Association.
“I was informed of the family’s condition by the editor-in-chief of Ipoh Echo after their situation was highlighted earlier.
“Following that, I immediately gathered several concerned NGOs to visit the family in order to gain a clearer understanding of the actual challenges they are facing,” he said.
Dr Richard said the family’s breadwinner, Nazreen, who works part-time as a photographer for Utusan Malaysia, is also forced to take on various other jobs, including e-hailing services, to cover his children’s daily medical expenses, which can exceed RM100 a day.
“Despite emotional exhaustion, he remains resilient for the sake of his children, who continue to show a strong fighting spirit,” he said.
He added that Aina, who is currently attending school, has shown good academic performance despite facing significant physical challenges, reflecting the strength and resilience of the family.
Dr Richard said the family is now appealing for continued support from the public, non-governmental organisations (NGOs), corporate bodies and government agencies to help ease the long-term financial burden of ongoing treatment.
As an initial step, he said the Lions Club, together with partner NGOs, has provided medical supplies, dry food, coloured pencils and cash assistance to help alleviate the family’s burden.
“I also pledge to seek further support from other NGOs, particularly within the Lions Club network, to ensure more comprehensive and sustained assistance can be extended to this family,” he said.
Members of the public are strongly encouraged to make a difference by contributing to Maybank account 162085541395 (Muhamad Nazreen Syah Musthafa) or by delivering assistance directly to the family’s home in Kampung Ulu Kuang, Chemor, Perak.
For those interested in supporting the family’s journey, Nazreen welcomes direct enquiries at 011-3651 2046.
