A teenager’s battle with a rare genetic disorder has strengthened the health minister’s resolve to improve access to crucial treatments for all patients.
KUALA LUMPUR: Health Minister Datuk Seri Dr Dzulkefly Ahmad said a meeting with a young Spinal Muscular Atrophy patient has reinforced his commitment to securing treatment access.
He was inspired by the story of 15-year-old Branden Lim, who was diagnosed with the severe neuromuscular disorder SMA Type 1 at just one year old.
Branden only gained access to treatment when he was 10, which Dzulkefly said gave the teenager a second chance at life.
“Seeing Branden today further strengthens my resolve at the Ministry of Health, especially in the area of rare diseases,” the minister said in a Facebook post.
He added that treatment is about giving children a future, hope and the opportunity to pursue their dreams.
Dzulkefly met Branden at a Rare Disease Day celebration at Kuala Lumpur Hospital, where the teenager presented him with a handmade art card.
The card bore a simple message: ‘Thank you for your support. Time is Neuron’.
The minister praised Branden’s use of creativity to share his story with the world.
He also commended the unwavering spirit of Branden’s parents, Edmund and Sook Yee.
The couple never gave up and founded the NGO WeCareJourney to support other families facing similar challenges.
Rare Disease Day is an annual international awareness campaign held on the last day of February. – Bernama
