'Please help save my daughter Sufi Syafrina's life', father pleads

KUALA LUMPUR - The father of Sufi Syafrina, an eight-month-old baby suffering from Spinal Muscular Atrophy (SMA) Type 1 disease pleads to the public to help save his daughter’s life.

“I hope the public would be willing to save my daughter’s life,” said Mohd Shafiq Idrus.

The 38-year-old father of three said Sufi needed additional treatment at the Thompson Hospital to buy Risdiplam, a medication for the disease which costs around RM45,000.

He said the medicine was only available at selected private hospitals and that he was unable to bear the costs.

Shafiq also thanked Sinar Karangkraf for the company's donation to ease his family’s burden.

“Alhamdulillah. I would like to thank Sinar Harian and the public who were willing to help us.

“She (Sufi) is eight months old now and the cost of the medicines have reached millions of ringgit,” he told Sinar Harian while receiving the donation from Sinar Karangkraf at the Tunku Azizah Hospital, today.

Shafiq said doctors who were treating his daughter advised him to immediately obtain the medicine.

“However, we continue to face financial issues as the costs were too high,” he said.

On July 23, it was reported that the ‘Adik Sufi Syafrina Fund’ was launched to collect donations for the family to buy the Zolgensma genetic medicine worth RM9 million for the girl.

Sufi currently depended on the Risdiplam medicine worth RM40,300 for 35 days to maintain her state of health besides receiving biotherapy treatments at the Shah Alam Hospital around three to four times a week.

Shafiq said his daughter’s condition was well despite having to be rushed to the hospital on Sept 22, due to a drop in oxygen levels.

He said doctors were forced to give a high dose of antibiotics to ensure his daughter’s condition was stable.

“Now her breathing is stable around 90 to 100 per cent when the doctors gave a high dose of medicine,” he said.