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