ANN/THE STAR – Wayang kulit, the ancient art of shadow puppetry, has traditionally been celebrated as a form of cultural entertainment. Today, it is transforming into a compelling tool for spreading awareness about pressing social issues.
Recognising its unique ability to captivate a wide audience, the Malaysia Lysosomal Diseases Association (MLDA) has partnered with Fusion Wayang Kulit to spearhead a campaign that brings attention to the struggles faced by those living with lysosomal storage diseases (LSDs).
MLDA, a non-profit organisation, advocates for patients suffering from these rare metabolic disorders, which predominantly affect children and disrupt their growth and development.
The symptoms of LSDs are often elusive, affecting multiple organs or imitating more common conditions, making them particularly challenging to diagnose.
With only 16 rare disease specialists across Malaysia, the path to diagnosis can be long and frustrating, often taking months or even years. Although there is no cure for LSDs, treatments like enzyme replacement therapy (ERT) offer some relief but come at a staggering cost, frequently surpassing MYR500,000 per year, with expenses that can soar even higher based on the specific condition and patient needs.
According to MLDA, given the constraints of government-based funding, many patients find themselves in need of financial assistance from diverse sources to cover the expenses of ERT. There are also the additional costs of supportive therapies, such as physical therapy, pain management and dialysis to consider.
“MLDA serves as a voice for patients with LSD as they, together with their families and caregivers, have limited information and resources to cope with managing these conditions.
Few people understand the challenges of raising a child with LSD, or how symptoms can severely affect a patient’s independence and quality of life,” said MLDA president Lee Yee Seng.
“Treatment with ERT is essential to keep their condition from getting worse, relieve symptoms and prolong their lifespan. However, the cost is prohibitive for the average patient,” he added.
BEYOND THE SHADOWS
The Tales Of Rare Resilience project, developed in collaboration with World Rare Disease Day, comprises four videos that illuminate the physical and emotional hurdles experienced by patients with LSD, as well as their families and caregivers.
Each narrative explores various facets of their difficulties, ranging from social isolation and loneliness to the anguish parents endure witnessing their child’s suffering, the quest for an accurate diagnosis, and the financial strain of treatment.
“We hope that these stories will resonate with all Malaysians, who can surely relate to the pain and suffering of these patients, that they will be inspired to support our mission in any way they can,” Lee said, adding that MLDA welcomes all forms of assistance, from donations to volunteers.
Under the guidance of Tintoy Chuo, Fusion Wayang Kulit is renowned for blending traditional wayang kulit with elements of pop culture and science fiction, including Star Wars and folklore.
Established in 2012 by Chuo and Take-Huat, Fusion Wayang Kulit has embarked on a contemporary journey, combining shadow puppetry, storytelling, and digital/multimedia ventures. Its creations have also been showcased in local museums.
The Tales Of Rare Resilience initiative was unique and posed a significant challenge, with its multi-layered stories.
“It was MLDA that connected with us and asked whether we would like to work with them on the project,” Chuo said.
“After I read through the brief and understood what MLDA does, I felt that it was a very important project, one through which we could contribute to their work and do our part in helping patients with LSD, so I agreed to do it,” he added.
Based in Kuala Lumpur’s (KL) GMBB arts mall, Fusion Wayang Kulit began work on the project, utilising its dedicated studio space to meticulously craft each narrative for the campaign.
A regular wayang kulit collaborator Pak Dain (Muhammad Dain Othman), a well-respected Tok Dalang (master puppeteer), narrated the video series – in Bahasa Malaysia with English subtitles. A team of seven traditional musicians backed up the project.
“It took several brainstorming sessions (with MLDA) to decide what stories we wanted to tell. Living with LSD or someone with LSD is a very complex scenario, so we narrowed it down to two stories told from the parents’ perspective and two focusing on the children with LSD.
“The videos on the parents’ experiences talk about the physical and mental challenges in caring for a child with LSD. As for the kids’ perspective, we covered two common issues – being bullied and not being able to physically keep up with other kids,” Chuo said.
The team created five new wayang kulit puppets for this project, comprising the main characters: a mother, father, daughter, son and the ‘Evil Shadow’, a manifestation of the burden of the disease. – Hanis Maketab
