Under a tent at an evening community gathering in Johor Bahru, a small group of mothers sat down with Minister in the Prime Minister’s Department Hannah Yeoh to talk about children living with Type 1 diabetes.
Their concerns were practical and urgent. They included access to diabetes technology, school support, public awareness, and the daily burden of keeping a child safe.
Yeoh listened attentively and said she would raise the matter with the Health Ministry.
It was a small, unscripted moment — plastic chairs, a community gathering, not a press conference.
But for the mothers, being heard mattered.
Type 1 diabetes, or T1D, is a lifelong autoimmune condition. It is not caused by diet or lifestyle, is not preventable, and currently has no cure. Children with T1D need insulin to survive, but managing the condition goes far beyond injections.
Families have to monitor blood glucose levels, count carbohydrates, calculate insulin doses, adjust for meals and physical activity, and remain alert to medical emergencies every day.
For parents, that responsibility does not stop when a child goes to school, joins a sports activity or even at bedtime.
K. Kanageswary was among the mothers present.
She used to work as a security officer in Singapore, but when her daughter was diagnosed with T1D three years ago, she had to leave that job to care for her.
“When I was working in Singapore, I had to leave my house at 4.30am and would only be back home at around 10.30pm,” she later shared with me.
“My daughter’s condition needed me to take care of her, so I quit the job and found a job in Johor Bahru which gives me more time to care for her, but the salary is a challenge for someone managing her condition.”
For Kanageswary, practical assistance would make a difference.
“It would really help if the government could help by distributing vouchers for buying relevant medical supplies,” she said.
The financial burden can be heavy for families managing T1D.
In a paper prepared by Frederick Yap’s mother and shared with me, families highlighted the cost of blood glucose test strips, ketone strips, needles, Continuous Glucose Monitoring sensors, insulin pump consumables and emergency glucose supplies. The paper also noted that an insulin pump can cost about RM30,000, while CGM-related costs may range from hundreds to a few thousand ringgit a month, depending on the system and supplies used.
The mothers also raised the need for better school-based support.
Children with T1D may need to eat, drink water, check their glucose levels, take insulin or rest when their blood sugar is out of range. But when teachers or school staff are unfamiliar with the condition, these needs can be misunderstood.
This is why awareness matters.
A child asking for a snack may not be seeking special treatment.
A child who suddenly looks tired, emotional or unfocused may not be misbehaving.
A child who needs to pause may simply be trying to stay safe.
For families living with T1D, support is not only about hospital appointments. It is also about classrooms, sports fields, tuition centres and community spaces understanding what the condition requires.
PHOTO: CHUAH BEE KIM
The setting itself had its own story
Yeoh met the mothers at Kampung Orang Asli Sungai Temon, a Seletar fishing community. The kampung is no stranger to outside visits. Volunteers from Pertubuhan Kebajikan Pelita JB have worked with Cornerstone International School to bring education support to children in the community.
It is one small, steady effort in a kampung still facing a much longer struggle over land, pollution and a fishing livelihood increasingly squeezed by coastal development.
That evening, two different concerns shared the same space.
One was about an indigenous fishing community trying to protect its home and way of life.
The other was about mothers trying to protect children living with a lifelong medical condition.
Both were asking for the same basic thing: to be seen, heard and supported in practical ways.
For the mothers of children with T1D, Yeoh’s willingness to listen was not the end of the journey.
But it was a start.
And for families who live with the condition every day, even a start matters.
