Kuantan Baby Needs Our Help To Survive
Baby Athif suffers from Spinal Muscular Atrophy and urgently requires Zolgensma therapy to
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Imagine giving birth only to find out days later that your baby has a rare disorder with no cure and a survival rate of just a few years. That is what a Kuantan couple is facing now.
Muhammad Athif Fahri who recently turned 1 year old was diagnosed with a rare disorder known as Spinal Muscular Atrophy (SMA) Type 1. This rare genetic disorder, which affects 1 in 10,000, affects the baby’s muscles and ability to breathe.
As a result of this disease, Athif is not yet able to crawl and has to use a breathing mechanism throughout the day. The most crucial part of the disorder is that there is no cure for it and to save Athif, a certain therapy known as Zolgensma is needed to reverse the genetic disorder. This therapy however would amount to RM 9 million.
It is crucial that Athif undergoes this therapy at the age of two to reap its full effects.
Athif’s parents Nur Azizah Zamri and Mohd Farhan Mohd Sait have two other children and are based in Terengganu. They must travel to Kuala Lumpur every month for Athif’s medical check-up. Currently, Athif is undergoing treatment at the University of Malaya Medical Centre (PPUM).
According to Azizah, in an interview with BFM, everything was normal at first but when she and Athif were about to be discharged from hospital, the doctors found an incomplete mora reflex with Athif and he was put in the NICU (Neonatal Intensive Care Unit). A month later, after sending the blood samples to the lab, it was found that Athif has SMA type 1.
Farhan also stated that once they knew that Athif had SMA type 1, they referred to doctors and specialists in the hospital, but many did not know about the disorder. Even though Azizah was a nurse herself, she too was clueless.
They had to do their own research and subsequently opened up two crowd funding efforts, Launch Good and Give Asia in order to raise funds for the Zolgnesma therapy.
It is difficult for me as a parent to see my son struggle with this disease. His muscles were strong when he was a newborn, but as time went on, they became weaker and weaker. Even basic actions like showering and transferring him have grown to be nearly difficult because he now needs a breathing machine just to survive.Nur Azizah, mother of Athif
Currently Athif is taking Risdiplam, a daily medication which cost RM40,400 per bottle, and it only lasts 50 days. This is the only treatment that is keeping Athif alive and is helping to slow down the effects of the disorder.
Azizah has reached out to the Ministry of Health many times for their help with the Zolgensma therapy. This issue was even mentioned in Parliament during the previouus tabling of the 2023 Budget by Tengku Datuk Seri Zafrul Tengku Abdul Aziz.
However, when Azizah spoke to The Rakyat Post, she mentioned that the Ministry of Health has yet to communicate with her regarding her son’s case.
If you wish to help, reach out to Azizah at her Instagram page.
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