Wayang kulit video series shines spotlight on rare disease


A family faces the ‘Evil Shadow’ in the 'Tales Of Rare Resilience' video series, a collaboration between Malaysia Lysosomal Diseases Association and Fusion Wayang Kulit. New shadow puppets were developed for this outreach project. Photo: Fusion Wayang Kulit

Wayang kulit, the traditional shadow puppet theatre, has long been viewed as a form of cultural entertainment. Today, it is also emerging as a distinctive platform for raising awareness on crucial issues.

Recognising the effectiveness of wayang kulit in reaching a broader audience, the Malaysia Lysosomal Diseases Association (MLDA) has collaborated with Fusion Wayang Kulit to launch a campaign shedding light on the challenges encountered by individuals with lysosomal storage diseases (LSDs).

MLDA is a non-profit organisation representing patients with LSDs, which are rare metabolic disorders that primarily affect children, impacting their growth and development. Many of the symptoms are non-specific, affect multiple organs or mimic more common conditions, making them difficult to diagnose.

With only 16 rare disease specialists in Malaysia, this often leads to delays in diagnosis, which can take months or even years.

Although there is currently no cure for LSD, the treatment used to alleviate its symptoms – Enzyme Replacement Therapy (ERT) – is expensive, often surpassing RM500,000 per year. Depending on the rare disease and the individual patient’s needs, these costs can escalate even further.

In 'Patients Shunned By Society', a mother comforts her daughter with LSD after her schoolmates refuse to play with her. Photo: MLDAIn 'Patients Shunned By Society', a mother comforts her daughter with LSD after her schoolmates refuse to play with her. Photo: MLDA

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,” says Lee Yee Seng, president of MLDA.

“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 adds.

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,’ says Lee, president of MLDA. Photo: MLDA‘We hope that these stories will resonate with all Malaysians,’ says Lee, president of MLDA. Photo: MLDA

“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,” says Lee, adding that MLDA is a non-profit organisation and 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,” says Chuo.

“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 adds.

Based in Kuala Lumpur’s GMBB arts mall, Fusion Wayang Kulit began work on the project, utilising its dedicated studio space to meticulously craft each narrative for the campaign.

‘We put a lot of thought into making these videos, so I hope viewers will watch them and understand the hardships that the parents and kids go through every day,’ says Chuo. Photo: Handout‘We put a lot of thought into making these videos, so I hope viewers will watch them and understand the hardships that the parents and kids go through every day,’ says Chuo. Photo: Handout

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,” says Chuo.

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.

Chuo adds that he took great care in the puppet designs, as he didn’t want to misrepresent patients with the disease.

As for the Evil Shadow character, it was created for the story portraying how parents of LSD patients grapple with their deepest fears and anxieties.

“It’s not a monster, but it’s disturbing and unsettling,” he says.

Understanding struggles

Fusion Wayang Kulit has dabbled in many kinds of storytelling projects – from a sweet romantic tale told at a wedding about how the bride and groom got together, to environmental lessons on recycling, renewable energy and river pollution.

It has also collaborated with a luxury goods brand in KL this month.

A video still of a father, who must overcome all kinds of obstacles to get his son with LSD diagnosed and treated. Photo: MLDAA video still of a father, who must overcome all kinds of obstacles to get his son with LSD diagnosed and treated. Photo: MLDA

But the Tales of Rare Resilience series holds a special place for Chuo.

“All of the stories we’ve worked on carry their own messages, but I find that the stories told in the MLDA campaign are slightly different and more meaningful because the videos were made to raise awareness about LSD, and inspire empathy and support from viewers,” says Chuo.

“We put a lot of thought into making these videos, so I hope that the viewers will watch them and understand the hardships that the parents and kids go through every day, which will hopefully encourage them to take some form of action, be it through donations or at least becoming more aware of those dealing with LSD.

“They don’t go around with a sign that says, ‘I have a rare disease’, as they, too, want to live their lives as normally as possible, so a bit of kindness and patience towards others will go a long way,” concludes Chuo.

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