This page dedicated as a tribute to our warriors and living heroes of rare disease in Malaysia.
Our warriors may have left us but they leave behind a legacy and valuable life lesson for all of us.
Our living hero’s serves a reminder to all of us on, no matter fragile a life can be, it’s the positivity and fighting spirit within us that keeps us moving.
Heros
Nurul Afrina Balqis
Morquio Syndrome Type IV A
Mathana
Morquio Syndrome Type IV
Muhammad Hazim Imran
Hunter Syndrome MPS Type III
Chong Jia Jian
Muccopolysaccharidosis Type 1
Branden
Spinal Muscular Atrophy
SMA patients
Spinal Muscular
Pesakit ichtyosis
Ichtyosis Disease
Warriors
Caitlyn Ooi Xuen En
(22nd September 2016 – 20th September 2018)
Infantile Pompe
Nor Aryan Mikail
31st January 2017 – 27th June 2018
Infantile Pompe
Nurul Nasrin
6th January 2007 – 4th September 2018
Morquio Syndrome
Darmash
MPS Type II disease (Hunter Syndrome)