KUALA LUMPUR: The struggle of a patient suffering from a rare, severe, and progressive neuromuscular genetic disorder has touched the heart of Health Minister, Datuk Seri Dr Dzulkefly Ahmad, further strengthening his resolve to ensure access to treatment.
In a Facebook post on Thursday, Dr Dzulkefly said Branden Lim, who was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 at age one, gained access to treatment when he was 10, giving the teenager a second chance to continue creating.
“Now, at the age of 15, he uses creativity to tell his story to the world.
“Seeing Branden today further strengthens my resolve at the Ministry of Health, especially in the area of rare diseases. Treatment is not merely about medicines, but about giving a future, hope and opportunities for children like Branden to pursue their dreams,” he said.
In the same post, Dr Dzulkefly also shared a photo with Branden, who presented him with an art card bearing the simple message ‘Thank you for your support. Time is Neuron’, in conjunction with the Rare Disease Day celebration at Kuala Lumpur Hospital on Thursday.
“Thank you, Branden, for this gift of artwork. You are an inspiration to me and to the entire MOH family,” he said.
Dr Dzulkefly said Branden’s journey was also supported by the unwavering spirit of his parents, Edmund and Sook Yee, who not only never gave up, but also founded a non-governmental organisation (NGO), WeCareJourney (SMACare), to ensure that other families with similar fates did not struggle alone.
Rare Disease Day is an annual, international awareness campaign held on the last day of February. – BERNAMA
