Need for rare disease policy

Daddy’s girl: Sivasangaran playing with his daughter Swathi who is battling a rare disease called Infantile Pompe Disease

PETALING JAYA: Once a week since December 2017, Sivasangaran Ku­­ma­ran will strap his 21-month-old daughter Swathi Nisha Nair in the car seat and make the long drive from Seremban to Hospital Kuala Lumpur.

At the hospital, Swathi gets three vials of drugs injected into her body as part of her enzyme replacement therapy.