Fifteen years ago, JOANNA HOTUNG’s life – and that of her family – was turned upside down by type 1 diabetes. She tells ELLE KWAN how they coped with the condition
THE ANNUAL SOCIAL Spring Fling on May 30 promised an even happier ending if Joanna Hotung’s dream came true. In 1999, the founder of Kids’ Gallery and mother to two had to begin injecting her seven-year-old daughter daily with insulin. Type 1 diabetes had come as a complete surprise to the family, causing them to make wide-ranging lifestyle changes, but it was also the catalyst to launch Youth Diabetes Action (YDA), a charity that today is striving to bring diabetes sufferers in Hong Kong a place to meet and receive support. When we spoke, Hotung was hoping that ideal was just one (big) party away.
How did you find out your daughter had type 1 diabetes?
Natasha started off complaining about tummy aches, but they did seem to disappear once she got going, so I wondered if it was something at school. The teacher said she was doing great, but then it was like she went back to being in the terrible twos. Everything was a drama with her. She was also really thin, despite having been a skinny child. She kept needing the toilet and she kept drinking, but it was summer in Hong Kong, so I was thinking that was normal. There was never any real clue. What made me take her to the doctor was her behaviour, but of course what she was doing was acting out because she felt so rotten.
The doctor didn’t think about diabetes, as it’s still rare in Hong Kong, but at the end of the consultation he suggested a blood test. We did the test and it came back that her blood sugar was through the roof. That was when he called me and told me: I had to pick her up from school and take her to Queen Mary Hospital, I’ve already called the ICU and they’re waiting for her.
How did you deal with the news?
Being trained how to do everything was the shocking part. We thought we’d hire a nurse, but then it was calmly explained to us that a nurse wasn’t the solution. The diabetes wasn’t going to go away – we needed to learn how to do everything, and so did she.
How quickly did she adapt?
She learnt how to do her injections very quickly. When she turned eight she did it herself, and she went to boarding school from the age of 13. It was a big decision for my husband and me, but during the eight years she was away for school and university I only had to fly over twice for a medical emergency.
What was the hardest part for you to deal with?
I did find it very difficult to inject her. I practiced on an orange, a teddy, my husband and then I finally did it. But people think that the hardest thing must be injecting, but actually the hardest thing is knowing how much to inject. It’s a constant balancing act depending on your estimation. Sometimes you inject too much, sometimes too little. Too low is the most dangerous. If you don’t get sugar within half an hour the sufferer can go into seizure, which is why most diabetics carry sugar with them everywhere. This confuses people. Everyone says, “Don’t give them sugar,” but that is a misconception; sometimes they really need it.
Why did you start Youth Diabetes Action?
Its vision is that no child should be held back because of diabetes, and its main aims are to provide ongoing support, education and counselling to all its members, and financial subsidies to families in need.
Is diabetes an expensive condition to manage?
Insulin is free through the Hospital Authority but the means to administer it is not and can be very expensive. YDA currently provides financial support to 70 families who would otherwise suffer hardship in paying for syringes, blood-testing equipment and other items.
Spring Fling, your annual fund-raiser, takes place this month. The party has a name for being an exuberant social extravaganza. What’s planned this year?
Our theme is Metropolis, and Silvio Berge has been working his design magic, creating a magnificent cityscape inside the Conrad Hotel’s ballroom. He really transforms the venue. He’s pretty tight-lipped, but we’ve been told to imagine life-sized elephants and fire-eaters!
Are you hoping this event will go towards funding your dream for the YDA – a dedicated centre for diabetes-affected families in Hong Kong?
The centre is still a dream, but we’ve been saving money in a capital fund for a few years, and with one more fund-raising push our dream may soon become a reality.
Why is it important for diabetes families to have somewhere to meet?
YDA would provide a proper learning zone to teach parents more effective techniques for managing their children’s diabetes and teach children how to start taking care of themselves, as well as a large kitchen where healthy cooking could be taught. It would also provide a base for children to see the friends who know what it feels like to have diabetes and benefit from their peers’ support. Since so much support for families comes from each other, our members would benefit enormously from a “home” of their own where they could meet, train, conduct research, or play.
Your children are almost grown. What do you know now that you wish you had known about raising children?
My girls are 22 and 19 now, so officially are adults. It’s such a cliché, but I really don’t know how time has gone so fast. Looking back, I probably would have spent more time with them one-on-one, exploring their specific interests and savouring every moment, rather than worrying about my todo list of chores or office tasks. In hindsight, the deadlines that seemed so important then really weren’t.