By Lan KB
Sivasangaran Kumaran isn’t your everyday father. That’s because on August 30, 2018, the father of two will be climbing the 13,435-foot Mount Kinabalu, all for good cause.
The senior service deliver manager with Microsoft Malaysia will be climbing Mount Kinabalu in an effort to create awareness on challenges faced by Malaysia’s rare disease children and their caregivers.
With this feat, Sivasangaran also aims to raise RM50,000 for Malaysia Lysosomal Diseases Association (MLDA) – the association which came to the aid of his then six-month-old daughter Swathi Nisha Nair when she was diagnosed with Infantile Pompe.
Climbing Mount Kinabalu certainly won’t be easy. It will take Sivasangaran two days to reach the mountain’s summit. Along the way, he will stay at different points on the mountain, facing low temperatures, high elevations and the occasional high winds.
“The oxygen levels and altitude will surely be challenging for me,” Sivasangaran said.
Sivasangaran also narrated his personal connection with rare disease.
“My daughter Swathi suffers from Infantile Pompe disease, an inherited disorder caused by the build-up of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs her ability to function normally, he said.
“Before Swathi was diagnosed, I did not know just how many parents and children were affected with rare diseases.”
With this mission, besides the goal to raise funds, it is also a journey to re-emphasise the need of government’s continuous funding for the rare disease children’s lifelong treatment comfortable and proper treatment area; elevate rare disease awareness among the public and the authorities; and medical professionals.
Equally important is for government to establish laws pertaining to rare disease and new born screenings. All this with the hope to save innocent lives and help diagnose rare disease children’s rights just like other citizens of Malaysia.
“My hope is to not only reach the summit myself, but also to support rare disease children and everyone who needs support for rare disease,” Sivasangaran said.
“The mountain is only a correlation of the battle our children with rare disease face every day. I am certain that this life-changing experience will be a moment I will never forget.”
To support their fundraising goal, donations can be made to Pertubuhan Penyakit Lisosomal Malaysia Public Bank Account Number 3169692035 (Donation reference MKJ4R).
This event is also supported by the Make It Right Movement powered by Brickfields Asia College.
Sivasangaran can be contacted at firstname.lastname@example.org or +6012 368 4548