BFM 89.9

HIGHLIGHTS  GE15
Podcast  >  Bigger Picture  >  Live & Learn  >  Rare Disease Day 2023: The Story of Baby Athif with Spinal Muscular Atrophy

Rare Disease Day 2023: The Story of Baby Athif with Spinal Muscular Atrophy

Nur Azizah Zamri | Mohd Farhan bin Mohd Sait

02-Mar-23 14:00

Rare Disease Day 2023: The Story of Baby Athif with Spinal Muscular Atrophy

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


This and more than 60,000 other podcasts in your hand. Download the all new BFM mobile app.

Categories:  managing diseasehealth policymedical advancesFamily/Parenting

Tags:  SMA Type 1Zolgensmalive & learnrare disease dayspinal muscular atrophy





Play / Pause

Listen now : BFM 89.9 -- The Business Station

Today’s Shows



6:00 AM

The 6AM Stretch

7:00 AM

World Market Watch

7:15 AM

Morning Brief

8:00 AM

The Breakfast Grille

Azrul Mohd Khalib, CEO, Galen Centre for Health & Social Policy and Ben Youdan, Director at ASH New Zealand

8:30 AM

Morning Brief

9:00 AM

Opening Bell

9:35 AM

The Property Show

10:05 AM

Open For Business

Adeline Tang, Freshable

11:05 AM

HerVantage

Kim May Chee, Founder and CEO, COCODry

12:00 PM

Enterprise Biz Bytes

Rina Neoh, Partner & Co Founder, Ficus Venture Capital

1:00 PM

The Breakfast Grille Repeat

Azrul Mohd Khalib, CEO, Galen Centre for Health & Social Policy and Ben Youdan, Director at ASH New Zealand

2:05 PM

Live & Learn

Should Calling Colleagues “Dear” and “Sayang” Be Considered Sexual Harassment?

3:05 PM

Earth Matters

Coral Reef Restoration - The Good, The Bad and The Ugly

4:05 PM

Health & Living

How Far Have We Come In Treating Coronary Artery Disease?

5:00 PM

The Evening Edition

5:35 PM

Today On Twitter

6:05 PM

Inside Story

7:05 PM

The Evening Edition

7:35 PM

Popcorn Culture - Review

The Little Mermaid

8:00 PM

Cruise Control

Daniel Fernandez, dsf.my | Ariff Roose | Richard Bradbury

10:00 PM

The Pulse