Swathi

On 15th 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.”

Siva SK with his family

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 – 15th 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

Siva pictured with his daughter Swathi, who was diagnosed with Pompe disease as an infant. — Pictures courtesy of Sivasangaran Kumaran
https://www.malaymail.com/news/life/2021/04/13/malaysian-dad-shares-challenges-of-raising-child-with-rare-pompe-disease-th/1966173?fbclid=IwAR1Y-GnNfzUfZrsnbvQjqMjvxwNd99wgS2D0uW2M7-rn7dDODFHhBK1EpI0

For Further Reference – please check

Worldpompe .org

What-is-pompe-disease

youtube.com – MLDA Official


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