Irfan and Mdm Iffah
Star PALs patient and caregiver

It started with minor slurring of his words before other symptoms like memory loss, attention deficit, and bowel control issues began to manifest. After several visits to the doctors, Mdm Iffah and her husband, Mr Abbas, learned that their son, Irfan, had X-ALD, a rare genetic disease that progressively affects the brain and spinal cord. Through the challenging and sometimes painful treatments, Irfan remained brave, even as his condition regressed. Today, he faces challenges with mobility and verbal communication.

Putting aside her career as a teacher to be Irfan's full-time caregiver, Mdm Iffah found the support of the Star PALs care team invaluable. In addition to taking care of Irfan's medical needs during their regular visits, the nurses also taught Mdm Iffah techniques for administering medication while the medical social workers provided invaluable counselling for Mdm Iffah and her husband. Irfan was also introduced to art therapy to keep him mentally stimulated and active.

"The regular visits by the nurse and social workers have been a great relief for us. Not only have they helped in Irfan's care, they have also provided me with emotional support.", Mdm Iffah shared.

At the Star PALS Family Day, Irfan's family got to know another family whose child had the same condition. This new connection brought Mdm Iffah some comfort in the knowledge that they were not alone. She said, "Being able to share our experiences has been incredibly heartening. Not just being able to share tips, but also the emotional journey and recognition that we are not the only ones going through this is invaluable for us."

“"Community" is how Mdm Iffah describes what Star PALS means to her, expressing that "I want to thank the nurses and the team who have been there for Irfan and for us. They made it just that bit easier for us."