The latest Little Stars film released earlier this week was filmed in Kuala Lumpur, Malaysia, and features the story of a family caring for a young boy, Joshua, who suffers from MECP2 duplication syndrome*.
In the film we meet Yoong Teck Chin, Joshua’s mother, who explains that Joshua was given away by his biological mother. She says, “When he was small he was so adorable, so chubby and so cute you know, I don’t know how to express.. but we love him so much. We came to know his biological mother when she was 8 months pregnant and at the time my husband and I were quite active in Church work. We were quite active in mission work, we thought maybe we might be able to help her. We never think of adoption of Joshua but she told me she wanted to give him away, give Joshua away.”
Joshua seemed to be a normal, healthy baby and Yoong Teck Chin and her husband did their best to raise him and to provide for his needs. They were initially completely unaware that he had a life threatening illness but did take him to see a doctor when he was young to see why he seemed to be slow to learn and reach his milestones. Described by the doctor as having global development delay it was only when he was around the age of 7 or 8 that they began to realise something more serious was amiss. At this time Joshua’s health began to deteriorate and he began to have epileptic seizures. A blood sample was sent over to Australia at which time he was officially diagnosed with MECP2 duplication syndrome.
There is no curative treatment for MECP2 duplication syndrome and when he became very ill they took Joshua to the hospital where, initially, medical staff did not want to care for him in the Intensive Care Unit (ICU). After finally convincing them to admit him to ICU, he spent two months there and in the High Dependency Unit, with Yoong Teck seldom leaving his side.
Not expected to survive, Joshua’s oxygen levels did improve enough for him to be transferred to the general ward, and later discharged. This is when Hospice Malaysia stepped in and assisted the family by providing them with the holistic support they so desperately needed.
Dr Ednin Hamzah, Medical Director of Hospis Malaysia explains why paediatric palliative care is a very important aspect of care for the community saying that the medical system tends to look at the child ‘from within a wholly curative framework’.
“The reality is that a different approach is needed for children with life limiting and life-threatening conditions,” he says.
Yoong Teck Chin appreciates the support they have received. She says, “We are so helpless. We really need this kind of service. We can’t get it from government. I’m so thankful for Hospis Malaysia because they offer support to us in terms of pain control, symptom management, nursing care and psychological support. You be a blessing to many families facing the same problems like us.
She tells us, “I have no regrets, I’m glad he is with us. I believe I can cope.”
This Little Stars film features:
Yoong Teck Chin (Joshua’s mother)
Dr Ednin Hamzah from Hospis Malaysia