Rare Disease Day 2023: The Story of Baby Athif with Spinal Muscular Atrophy
Nur Azizah Zamri | Mohd Farhan bin Mohd Sait
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Rare Disease Day is celebrated every year on the 28th of February (or 29th in leap years) - the rarest day of the year. The day aims to raise awareness about rare diseases and the challenges faced by people living with these conditions. Rare diseases are the ones that affect a small percentage of the population, often fewer than 1 in 2,000 people. Muhammad Athif Fahri is one of those affected by a rare disease - he is suffering from Spinal Muscular Atrophy (SMA) Type 1, which affects his muscles and ability to breathe. Doctors have said the disease is incurable, and that without proper treatment, he will not make it past the age of two. We speak to Baby Athif's parents, Nur Azizah Zamri and Mohd Farhan bin Mohd Sait, about how life has changed for them all since Athif's diagnosis, and they also discuss how they are trying to get the right treatment for their youngest son, to save his life.
*Zolgensma therapy is a treatment that can halt or even reverse the effects of the disease. Baby Athif needs to raise RM9 million to cover the cost of the treatment and related expenses. Find out how you can support him by clicking here and here.
Image Credit: Nur Azizah Zamri & Mohd Farhan bin Mohd Sait
Produced by: Juliet Jacobs
Presented by: Juliet Jacobs
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Categories: managing disease, health policy, medical advances, Family/Parenting
Tags: SMA Type 1, Zolgensma, live & learn, rare disease day, spinal muscular atrophy,