Family members, corporate partners and friends come together to #showyourrare at the exhibition at Balai Seni Negara.

KUALA LUMPUR, MARCH 11 2019 – When Irene Tan saw the portrait of her daughter Kelly Ng at “Rare Lives”, a charity art exhibition highlighting rare disorders and diseases, she felt it brought back a little piece of her.  

“Every one of the paintings has a story behind it,” Irene said. “It’s not just a painting but a look into the life of these children and what they’re going through.”

 The “Rare Lives” Charity Art Exhibition at the Creative Space @ Balai Seni Negara in Kuala Lumpur highlights the lives of people and children living with a rare disease. Each portrait represents the many characteristics of the subject such as serenity, grit, fortitude, beauty, radiance, confidence and more. Malaysian artist, Chiang Sook Siang donated her time to paint these portraits, with hopes of shedding a positive light on the lives these individuals.

 “It brings me hope,” Irene said.

 Her daughter Kelly was born with Mucopolysaccharidoses (MPS IVA) also known as Morquio Syndrome, a rare lysosomal storage disease (LSD) that debilitates the body over time if not treated.  Periodically, Kelly needs to undergo numerous corrective surgeries as the body develops with age, growth and its physiological limitations. Treatment for Kelly’s condition costs RM1.6 million per annum, for life.

 “This is a beautiful way to represent rare diseases and diseases people don’t normally hear of in a way that’s approachable,” said Mr. Lee Yee Seng, President of the Malaysia Lysosomal Diseases Association (MLDA) whose own two daughters live with LSD that affects their enzymes. “Some of these patients are likely to have no treatment as they are invisible by choice to many in the medical community, the research institutes, and government due to lack of scientific knowledge of the disease”. Because these diseases lack treatment of any kind, Mr. Lee hopes “Rare Lives” raises funds, creates awareness, and most importantly, puts a face to these hardly-studied diseases.

 “Malaysia needs to see LSD”, said Rachel Siew, Author and Community Advocate of MIRM. “The community need to understand and see our humanity. We are not our disease and we are deserving of equal treatment just like any other disease,” she adds.

 Steve Lai Chan Shiang, Assistant Curator of Balai Seni Negara said “Rather than being benevolent to help the rare disease community, Sook Siang is showcasing courage and diversity of “Rare Lives” using art.” “She is not only creating a public awareness but also providing more practical support by fundraising the charitable organization.”

 “Rare Lives” will be held beginning January 15 at the Creative Space of the National Art Gallery. Proceeds will go to the needy LSD patients under the care of MLDA. Members of the public are also encouraged to donate to Pertubuhan Penyakit Lisosomal Malaysia, Public Bank Account Number 3169692035 (Donation reference RARELIVES). 

 The exhibition is made possible in collaboration with the Ministry of Tourism, Arts and Culture Malaysia, Balai Seni Negara and The Make It Right Movement (MIRM) powered by BAC. 

ABOUT THE ARTIST

Chiang Sook Siang is an introvert. Often misunderstood and fearful when meeting others, Sook Siang had no understanding of autism since young. However she does know that she is born to be an artist, an artist in her own right. Armed with an Engineering Diploma from UTM, English Literature Degree from UPM and Diploma in Fine Art from Aswara, Sook Siang finally found solace in her art and expresses it in her best way possible. She expresses pain through her works, which translates as solace to her very being. Despite the detail there is often dark, expressive quality to her images that verges on the human condition. Her own style is somewhat near as photorealistic; Sook Siang’s personality is present in her drawings. For more details on Chiang Sook Siang, follow her @sooksiang_