Scaling Mount Kinabalu to raise awareness about rare diseases

Sivasangaran with the Journey for the Rare banner on the summit of Mount Kinabalu.

KOTA KINABALU: A father’s love for his ill baby has pushed him to get out of his comfort zone as he strives to create awareness on rare diseases in Malaysia.

Sivasangaran Kumaran, 39, whose 16-month old daughter, Swathi Nisha Nair, suffers from a rare disease called Infantile Pompe, decided to scale this region’s highest mountain – Mount Kinabalu, to bring the message of hope and create awareness.

The senior service delivery manager with Microsoft Malaysia also set up a fund raising page together with the help of NGO’s to help families with rare disease sufferers, among others.

He went up together with a mascot called ‘Hope’ and managed to reach the peak on Aug 31.

“I have scaled Mount Kinabalu once several years back, and this time I came with a mission,” Sivasangaran said when contacted.

He said the climb for him was quite challenging, as he is not an avid climber, but he pushed through, thinking of his daughter and the other families who have to go through the same ordeal as him.

Infantile Pompe is 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 Swathi’s ability to function normally

Sivasangaran said like the average Malaysian, he had little knowledge on rare diseases before this.

“But when my daughter was diagnosed with Infantile Pompe, I got to know others who have families with rare diseases, as well as those who suffer from them,” he said.

“From there, I joined various related groups and organisations so that I know better and learn how best to cope mentally and physically,” he said.

He said he learnt that the awareness on rare diseases were so little in Malaysia, therefore there was not much help or support that could be rendered to families nor their caregivers.

“This is also why I decided that as a father to a suffering child, I need to go beyond just being by her side, but to create awareness and let the public know that there is so much they can do to help us cope,” Sivasangaran said.

He said with this mission, besides the goal to fundraise, it is also a journey to re-emphasise the need for the government’s continuous funding for the rare disease sufferers’ lifelong treatments,.

He said it is also to call for help in providing comfortable and proper treatment area, and elevate rare disease awareness among public, authorities, and medical professionals.

“It is equally important for the government to establish rare disease and new born screening acts, all with the hope to save innocent lives,” he said.

He said the mountain is only a correlation of the battle children with rare disease face every day.

To support their fundraising goal and know more about this cause, the public can visit the Facebook page ‘Mount Kinabalu : Journey for the Rare’, or donate 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 also be contacted at [e-mail] or 012-3684548.