A group of parents is finding support in each other's experiences as they navigate life with having a child who has been diagnosed with type 1 diabetes.
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Aside from having a network where they exchange tips, they offer their children a chance to socialise and not feel alone.
Engadine mum Bec Luttrell recently organised an event at Flip Out Caringbah on March 2, when 25 children with type 1 diabetes will unite for a day of fun, while supporting The Type 1 Foundation charity.
Mrs Luttrell's daughter Felicity, 7, was diagnosed at age 5. "She had insatiable thirst and was losing weight. The only reason we went to the doctor was because I was aware of my husband's experience in also having type 1 diabetes," Mrs Luttrell said. "We did a finger prick test because we already had the equipment at home."
She says technology to manage type 1 diabetes is amazing. "We get lots of warning signs if her blood sugar gets too low - it sends an alert to our phones," she said. "At night I can go to sleep and my phone will beep if her blood sugar drops unexpectedly, and I give her juice. She doesn't even wake up, I just put the straw in her mouth." Felicity also has an insulin pump.
The best thing she said, was linking to other families who share their experience. "It can be lonely having a child with a chronic condition," Mrs Luttrell said. "So it's nice to meet parents who are dealing with it, and for kids, they know they aren't alone."
Julia Mulcair's daughter Ruby, 4, was diagnosed during a COVID-19 wave. She had vague symptoms - lethargic, not eating much - common symptoms of any typical virus a child may catch.
"A GP wouldn't see her because they thought she had COVID-19," Mrs Mulcair said. "We called an ambulance and they said she was OK. One night she woke up chugging water and wanting to go to the toilet several times. I knew something wasn't right so I took her to hospital, where they said her blood sugar levels were life threatening."
Ruby has an identical twin sister, Harper. "There is about a four per cent chance for a normal sibling to develop diabetes but for Harper it's about 35 per cent she will develop it soon, and 65 per cent chance she will develop it before she's 65," Mrs Mulcair said. "We haven't tested her yet. It wasn't on our radar with Ruby, but had she been screened at birth, maybe it would have been."
Mrs Mulcair says it's very much "learn as you go". "A lot of what you learn is through other parents," she said. "It's so helpful to have people around who are going through the same thing. Diabetes is one of those conditions that people shrug off and say 'oh you just have to watch what you eat.' It's so much more than that."
Sian Thompson's son Henry, 6, was two and half years of age when he was diagnosed. Also drinking and urinating frequently, it was assumed he had a UTI. But Mrs Thompson's father, who is a GP, advised her to get Henry checked at hospital.
"It's like 180 more decisions to you make a day. But having the Continuous Glucose Monitor (CGM) is great - it gives you five minute updates. He can eat what he wants but we just need to know the carb count," she said.
