RM9mil therapy for toddler with rare genetic disease


Compiled by ARFA YUNUS and C. ARUNO

A TODDLER suffering from the rare genetic disease spinal muscular atrophy (SMA) Type 1 is showing signs of improve- ment after receiving multi- million ringgit worth of genetic therapy.

Kosmo! reported that 21-month-old Muhammad Athif Fahri Mohd Farhan received the RM9mil genetic therapy injection in July.

According to his mother, Nur Azizah Zamri, 33, the boy could now move his arms and legs and was learning to recognise and use his senses and muscles.

Muhammad Athif, she said, was also able to breathe normally and was no longer reliant on a ventilator.

“Previously, he was unable to move and could only lie down. Now, he can move his arms and legs,” she said at her house in Permatang Badak, Kuantan.

“The most noticeable progress is that he can support himself when he sits, and his face doesn’t turn blue like before.

“My son has also started to speak and is able to shout and call for his sisters.”

Muhammad Athif’s treatment was sponsored by public donations as well contributions from the Pahang government.

The genetic therapy injection, which helps stop muscle deterioration, is only effective for children with the disease before the age of two.

Muhammad Atif is currently undergoing three sessions involving speech therapy, occupational therapy and physiotherapy for two hours daily at the WQ Park Health and Rehabilitation Centre in Indera Mahkota, Kuantan, which aims to stimulate his senses and muscles.

> Berita Harian highlighted that Ukrainian Darina Porhun, 22, who, after travelling to Malaysia in the hope of making it as a model, had now landed a role in a local production.

Despite having no experience as an actress, Porhun said she felt lucky to be entrusted with a role in the film Klepet directed by Indra Putra.

Porhun, who has been living in Kuala Lumpur for a year, said she came to Malaysia by chance.

“I was working in the technology field for a company in the United States but was sent to Malaysia a year ago.

“I fell in love and decided to continue living in Malaysia. However, my work goes on as usual because I am allowed to work remotely.

“I have always wanted to go to an Asian country. I never thought that this dream would finally come true.

“I am happy and feel safe in Malaysia considering that my birth country is in turmoil,” she said.

The above articles are compiled from the vernacular newspapers (Bahasa Malaysia, Chinese and Tamil dailies). As such, stories are grouped according to the respective language/medium. Where a paragraph begins with a >, it denotes a separate news item.

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