Swathi, the Pompe Warrior

On 15^th April 2021, the Annual International Pompe Day , Siva SK from Malaysia shares an awareness video about his daughter.

This year’s theme is “Pompe Around the World,” the International Pompe Association (IPA) announced. The event’s slogan is “Together We Are Strong.”

ITS NOT HOW YOU FALL, IT’S HOW YOU RISE – says SIVA SK

“” It’s never an easy decision to share our personal story to public but ever since Swathi was diagnosed with Infantile Pompe, we have been trying our best to raise awareness about this life threatening disease. It’s our humble hope that, awareness could save as many innocent children as possible – current and future generations. And possibly, one day, a CURE! Today is International Pompe Day 2021 – 15^th April Feel free to share the video. Your share may save a life. ” Thank you On behalf of world Pompe families

( This is a public awareness video educating public about lysosomal storage disease. It’s a joint effort between MLDA & Sanofi Aventis(Malaysia) Sdn Bhd. And this video is timely publish 1 day before 15 April 2021, which is International Pompe Disease Day )

Recently Siva shared details and challenges of raising his daughter with a Rare Disease -Pompe disease that costs RM500,000 yearly to treat ———––the news article was featured in MalayMail