(From second left) Lim and Dr Lee flanked by Mappac supporter Frank Goh (left) and legal advisor Joseph Yu at the launch of the centre in Petaling Jaya. — Photos: Low Lay Phon/The Star
AS her newborn was undergoing palliative care at Hospital Kuala Lumpur (HKL), Lini Ismadi received support from Malaysian Association of Paediatric Palliative Care (Mappac) president Dr Lee Chee Chan.
Lini said her son Ahmad Harun Ahmad Azzam was not expected to live beyond three months.
“My son was born in a private hospital and was later transferred to HKL. That’s where I was introduced to Dr Lee.
“He and the nurses provided me with the training I needed to care for Harun at home.
“With palliative care, he lived up to nine months,” she said at the launch of the Mappac centre in SS2, Petaling Jaya, Selangor.
Harun was diagnosed with an underdeveloped brain and suffered 20 heart infections during his short life.
“My family is grateful for all the support we received, and for every day that he lived,” said Lini, who is now an advocate of paediatric palliative care.
While caring for her son, she saw the importance of this service for families of children diagnosed with life-threatening illnesses.
Lini takes part in paediatric palliative care awareness activities as part of advocacy action.
Lini has one surviving son, Ahmad Musa, nine, for whom she wrote a book in memory of his lost sibling.
The book, Fly Harun, Fly, is dedicated not only to Musa, but to children who have lost a sibling, to help them understand and cope with the death.
As part of her voluntary advocacy work, Lini reads her book at libraries and participates in awareness activities to promote paediatric palliative care.
The Mappac centre serves as a hub for volunteers like Lini and for members of the palliative care sector to conduct workshops, training and activities.
Dr Lee said there were currently 80,000 children in Malaysia who needed palliative care, but there were only about 150 volunteers nationwide.
“Doctors and nurses tend to avoid me because I’m known as the doctor who deals with dying children.
“It is like a taboo, due to misconceptions.
“However, children needing palliative care require their parents and caregivers to be trained.
“Parents cannot become caregivers overnight, so we train and support them,” he elaborated.
Kampung Tunku assemblyman Lim Yi Wei said it was difficult to approach parents of terminally ill children.
“I advocate for mental health and my office frequently conducts health screening activities.
“However, palliative care is a much less discussed issue in our society.
“I am glad this association is located in my constituency, and we will offer it our support,” Lim said.
Mappac advocates public awareness of the importance of good symptom management, parental support and end-of-life care for children.
The association also oversees training and education programmes for doctors, nurses, allied health staff and volunteers.
In terms of clinical services, it aims to develop role models of evidence-based paediatric palliative care teams.
Additionally, Mappac promotes research on new developments in children’s palliative care, ensures quality assurance in clinical services and advocates for supportive policies.
