BFM 89.9

HIGHLIGHTS 
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

Thought-provoking discussions on ideas, people and events shaping our lives.

7:00 AM

World Market Watch

Tim Waterer, Chief Market Analyst, KCM Trade tells us where international markets are heading.

7:15 AM

Morning Brief

We recap global and local headlines from today's papers and portals.

7:30 AM

Morning Brief

Farlina Said,Director of the Centre for Technology and Policy at ISIS Malaysia talk about the tech side of the US-Malaysia trade agreement.

7:45 AM

Morning Brief

Dato' Wong Siew Hai, President of the Malaysia Semiconductor Industry Association (MSIA) discusses how the US-Malaysia trade agreement might impact Malaysia's semiconductor industry.

8:00 AM

The Breakfast Grille

Jayan Menon of ISEAS–Yusof Ishak Institute and Elina Noor of Carnegie Endowment for International Peace discuss Malaysia’s year as ASEAN chair and key takeaways from the summit.

8:30 AM

Morning Brief

Thomas Daniel of ISIS Malaysia discusses the potential outcomes from US Defence Secretary Pete Hegseth’s second Asia tour.

8:45 AM

Morning Brief

(REPEAT) We dive into the local and international news that matters to you.

9:00 AM

Opening Bell

(REPEAT) Tim Waterer, Chief Market Analyst, KCM Trade tells us where international markets are heading.

9:15 AM

Opening Bell

Amalia Zarir, Analyst, MBSB Research gives an outlook as well as buy ideas for investors in the auto sectors.

9:35 AM

The Property Show

Kenneth Soh of PropertyGuru and & iProperty Malaysia discusses rising property scams and how to restore trust in the housing market.

10:05 AM

Open For Business

Shane Happach, CEO, Coda

11:00 AM

The Workplace

Sawu Fang Kuan, Senior Client Officer, Ipsos Malaysia & Hetal Doshi, Organisational Psychologist & CEO, O-Psych

12:00 PM

Enterprise Explores

Previn Pillay, Country Manager, Visa Malaysia

1:00 PM

The Breakfast Grille Repeat

Our flagship show, we feature both game-changers and groundbreakers in the hot seat.

2:05 PM

Discovery Hour

An eclectic selection of BBC shows, curated with variety in mind.

3:05 PM

Earth Matters

4:05 PM

Health & Living

5:00 PM

Top 5 at 5

6:00 PM

Big Issue

7:00 PM

Stories of KL

We speak to Datuk Hajeedar Abdul Majid about how his decades of architectural work has shaped Kuala Lumpur.

8:00 PM

Cruise Control

Daniel Fernandez, Managing Editor, dsf.my