To raise funds for them, the Malaysian Lysosomal Disease Association (MLDA) has joined forces with Fusion Wayang Kulit to tell stories of LSD through shadow puppetry.
The four-part “Fusion Wayang Kulit Tales of Rare Resilience” is based on actual stories from LSD patients, and showcases common experiences from different aspects of their journeys.
Videos have been released since Feb 29, which was World Rare Disease Day, and will continue to be published on MLDA’s YouTube page every Friday.
According to MLDA president Lee Yee Seng, this project is aimed at spreading awareness on these rare conditions through a captivating and uniquely Malaysian medium.
“We hope these stories will resonate with all Malaysians, who can surely relate to the pain and suffering of these patients, and that they will be inspired to support our mission in any way they can,” Lee said.
LSDs are rare metabolic disorders that primarily affect children, impacting their growth and development. Many of the symptoms are non-specific, and affect multiple organs or mimic more common conditions, making them difficult to diagnose.
Treatment also comes with challenges, with the costs of enzyme replacement therapy often costing over RM500,000 per year.
Depending on the specific rare disease and the patient’s unique requirements, these expenses can escalate further, and there might be associated costs from supportive therapies such as physical therapy, pain management, and dialysis.
“This is why we are determined in our mission to raise awareness about these conditions and help provide financial support through sponsorships and fundraising efforts like these,” Lee added.
Teaming up with MLDA is Fusion Wayang Kulit, an award-winning local team dedicated to reviving the traditional art of shadow puppetry by merging it with the digital realm. Their most well-known works include wayang kulit versions of “Star Wars” characters and DC superheroes.
This project is a far cry from the pop-culture icons Fusion Wayang Kulit co-founder Tintoy Chuo usually works with, but he is determined to bring its stories to life with sensitivity.
Chuo worked closely with MLDA for the project, with the two groups having detailed discussions on how best to depict their patient’s experiences through shadow puppetry.
Four stories have been written. “Long, Heart-breaking Quest for the Diagnosis” captures the uncertainty and turmoil faced by parents trying to help their children with LSDs. “Patients Shunned By Society” is about a young girl who faces exclusion at school owing to her physical condition.
“Battling Tiredness and Weakness In the Fight” features a young boy who just wants to play but undergoes limitations due to his weak muscles. The project will come to a close with the poignant “Facing the Darkest Fears, Seeking Hope Amidst the Shadows”.
In addition, MLDA has uploaded “The Unseen Battle”, an introduction to the series:
For the project, Chuo created five puppets for the project. Four represent a member of a family: a son, daughter, father and mother. The last puppet, the most challenging one to shape, is an “evil character”.
“In other circumstances, you can go as dark as you want when making an evil character. But this is meant to represent the diseases that the patients go through every day, so you have to handle the subject carefully,” Chuo said.
“This evil character is a representation of the emotional challenges that parents go through in situations like this.”
Chuo expressed gratitude for being able to contribute to this project, and wishes for it to spark greater empathy for people who live with LSD.
“I hope those who watch these videos feel the emotion in them. May they watch what the characters go through and think: ‘What if that were my son or daughter, or niece or nephew?’
“Hopefully, they will be inspired to find out more and be encouraged to do something to help or support them. And maybe, if they go out and encounter a child that might look or act differently, they will be more understanding towards them.”
Look out for the remaining videos on YouTube. For more information or to donate, visit MLDA’s website, and follow them on Facebook.