Branden Lim (left), 12, with brother Jaden, 15. Branden has the rare genetic condition spinal muscular atrophy which requires expensive medical treatment. — Photo provided
ELEVEN years ago, our family received news that would change our lives in a totally unexpected way: our younger son Branden, then only one year old, was diagnosed with the rare genetic disease spinal muscular atrophy (SMA). The doctor told us that the disease was progressive and had no cure or treatment (then), and that our son was not expected to live for long. SMA is a leading genetic cause of death in infants due to progressive, debilitating muscle weakness.
It has been a very long journey, full of ups and downs, despair and joy, but Branden is still alive and doing relatively well today, although he requires 24-hour care physically from us (we have both given up our corporate jobs to become full-time caregivers and SMA activists). Three life-changing treatments, including a gene therapy that is a cure if given before the child is two years old, have been developed and approved by the US Food and Drug Administration for SMA during this time. One of them is approved for use in Malaysia.
Subscribe or renew your subscriptions to win prizes worth up to RM68,000!
