Treatments for SMA are available, but unaffordable for most Malaysians

WeCareJourney co-founder and Lim's wife Yap Sook Yee prepares the daily dose of risdiplam for their son Branden. This drug, which is based on patient weight, is estimated to cost a maximum of US$340,000 (RM1.5mil) a year.

In the past six years or so, patients with spinal muscular atrophy (SMA) and their families were filled with hope as treatments for this rare disease were confirmed to be effective and approved by regulatory agencies around the world.

Previously without treatment and with a limited lifespan for the majority of patients, this progressive disease now has three available drugs that tackle the condition directly.