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Malaysian dad shares challenges of raising child with rare Pompe disease that costs RM500,000 yearly to treat | Life

Tuesday, 13 Apr 2021 05:27 PM MYT BY TAN MEI ZI Siva pictured with his daughter Swathi, who was diagnosed with Pompe disease as an infant. Pictures courtesy of Sivasangaran Kumaran Subscribe to our Telegram channel for the latest updates on news you need to know. PETALING JAYA, April 13 Sivasangaran Kumaran did not think too much of his daughter Swathi Nisha Nair’s quirks as an infant. The father-of-two, who goes by Siva, noticed how Swathi liked to stick her tongue out, make odd facial expressions, and had delayed developmental milestones. It wasn’t until she developed pneumonia at the age of six months in 2017 that Siva and his wife discovered a much deeper problem with their daughter’s health.

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