New events for children and families living with type 1 diabetes
Thursday, 21 February 2019
To be held at Nerang on Saturday, 2 March, from 10am to 2pm, Diabuddies is free for children under 15 years of age living with diabetes and their siblings. It’s $10 for parents and carers who are Diabetes Queensland members, and $15 for non-members.
One little girl who did a dance when she received her personally addressed invitation to the day is Isabel Kinder, 8, who was diagnosed when she was 3 and a half.
“Isabel and (her brother) Nicholas jumped up and down when she got her invitation,” Isabel’s mother, Rachel, said.
“They thought it was like a diabetes birthday party. They were especially excited it is at Ninja HQ because one of their favourite TV shows is Ninja Warrior.
“They were so funny,” Rachel said with a laugh. “Hooray, we get to go to a Diabuddies Day!”
Isabel’s grandparents, Paul and Karen Manning, have been instrumental in making sure Diabuddies Days get off the ground in Queensland.
They are the administrators of the Geoff Booth Foundation, which is generously supporting the event.
“Geoff Booth and Annie Tan were a couple that we had known for a very long time,” Paul said in a statement.
“Both their lives were cut short by cancer but they had the generosity and foresight to setup a charity foundation from their estate in order to donate in perpetuity to worthy medical causes such as Diabetes Queensland.
“Karen and I have been involved in the foundation for 10 years now and are pleased to declare that we now wish to donate to the Diabuddies Day on an ongoing basis.
“We thank Geoff and Annie and pay tribute to them by providing a quote that was used when the foundation was setup: ‘The only wealth you will keep forever is the wealth you have given away’ – Marcus Aurelius.”
Isabel is looking forward to the get-together. “I want to do lots of activities and maybe make a new friend,” she said.
Mum Rachel said although Isabel’s diagnosis at 3 was traumatic, it has probably been less of an adjustment for her daughter long-term because she can’t remember life without diabetes.
“Isabel’s brother Nicholas is two years younger than her and has never known her to be any different,” Rachel said.
“He can get cross and say ‘How come I can’t have a juice? Just because Isabel has diabetes she gets all the good stuff!'”
Isabel was determined to have a sleep-over with her grandparents on the day Rachel started having strong suspicions her daughter’s thirst and frequent urination may have had a medical cause.
“I rang Karen and she said Isabel was sleeping all the time, only waking for a drink of water, to go to the toilet and then going back to sleep,” Rachel said.
“I asked Karen to meet me halfway between Brisbane (where the Mannings were living) and the Gold Coast so I could get Isabel to a doctor urgently.
“Isabel didn’t really rouse and she was lying in the bottom layer of a double pram with Nick in the top. I asked the GP if she could be tested for diabetes.
“He said the results from the blood tests would take three days and not to worry about it. He thought she had a virus. I insisted, but he refused.
“I walked out of the GPs and took her straight to the Emergency Department of the Gold Coast University Hospital.
“I told the nurse what had happened. By this stage, Isabel was unresponsive.
“The nurse took one look at her and did a finger prick test straight away. Her blood glucose levels were 44mmol/L.”
“She had ketoacidosis and spent a week in ICU to stabilise her condition. We were very lucky that we took her to the hospital when we did.”
Despite how ill Isabel was when first diagnosed, Rachel and her husband Rhys don’t make a big deal of their daughter’s condition. They refuse to let Isabel’s diabetes become the excuse for “I can’t” or “I won’t”.
“This won’t be the only thing that will happen to her that’s life-changing,” Rachel says matter-of-factly. “There are only a couple of times a year where she will get grumpy about diabetes and asks ‘Why do I have to have it?’
“I tell her ‘It’s just the way it is’. I remind her of her friend who is hospitalised with asthma and needs ongoing treatment, and other people who have life-threatening allergies.”
For Isabel, the worst part of diabetes is the finger pricking.
“We have a Freestyse Libre, which we love, and we were lucky enough to get a CGM (continuous glucose monitor) with the subsidy,” Rachel said.
“They have had a massive impact on Isabel’s mental, emotional and physical health because she no longer has to do the 10+ finger pricks a day and we have better control of her BGLs.
“The only thing is the CGM does need calibrating twice a day. She grumbles, groans and throws the odd tantrum then I remind her in the same way she has to brush her teeth twice a day, she has to calibrate her BGLs with a finger prick twice a day. It’s just the way it is. We use the Libre when she wants a break from carrying a phone, the constant beeps and the dreaded two finger pricks a day.”
Rachel says the constant support of her parents-in-law, Karen and Paul, Isabel’s aunts, uncles and other grandparents is a mainstay in their life with diabetes.
“They don’t treat her any differently; they always welcome her for sleep-overs or for a couple of hours to play with her cousins. The diabetes is not allowed to get in the way. We don’t make it complicated.”
“They just ring or text me before she eats, tell me what she’s been doing before she eats, what she is having to eat, and what she’ll be doing afterwards, then we work out her insulin,” said Rachel.
“I used to talk them through it so that they would learn to understand why I’m doing what I do and in the process I was teaching them how to manage it without them even realising it.
“With the CGM we can always see what’s going on with her BGLs; it gives us and them peace of mind and confidence that she’s ok without us having to constantly check up on her.”
Rachel says she’s aware her responsibility to Isabel as a child is tempered by the need for her daughter to know how to look after herself, just in case she can’t always be there to help her.
“Rhys and I try to do most things now because she’s a child and we’re aware burnout can happen at any age, but we’ve made sure she knows how to do everything including reading and understanding the numbers.
“She prefers to do her own finger pricking and injecting.
“The only thing we don’t let her do is have control over what the insulin dose will be. She needs to know how to do things like calibrate her CGM if it goes out of whack because I won’t always be there.”
“She’s safe if she knows what she needs to do and when she needs to do it. It’s like anything else in life. Knowledge is power.”