By Jenna Beeching, JDRF Community Fundraising Coordinator SA
In June 2011 our lives changed in every possible way when our two-year-old daughter, Chloe, was diagnosed with type 1 diabetes.
Chloe had been wetting through nappies and bed linen and guzzling water insatiably, but diabetes didn’t even enter my mind before the diagnosis.
Fortunately our GP recognised the symptoms, and after a finger prick they immediately called the children’s hospital to alert them to the fact we were on our way.
We spent an emotional week in hospital learning what our new life would look like, including how to count carbs and calculate and administer insulin.
Repeatedly finger pricking Chloe’s tiny hands and holding her down to inject insulin was horrible.
Like many families, we left the hospital feeling incredibly overwhelmed with the magnitude of information we needed to retain to keep our toddler alive. Given how broken we felt in that moment, it was probably very lucky we didn’t know how difficult the first two years would be.
We didn’t have a CGM or pump, and despite following medical directions to the letter and applying everything we’d learnt in hospital, we experienced countless diabetic seizures, ambulance callouts and hospitalisations.
Regardless of insulin adjustments and slow-release carbs before bed, our endocrinologist was at a loss as to why Chloe’s overnight hypos were so severe and could only put it down to her having an unusually high insulin sensitivity.
We resorted to setting hourly alarms overnight to finger prick to try and catch the onset of the lows. It left us so fatigued that it was difficult to function during the day.
Fortunately, by kindy age, when the first of our younger two children came along, Chloe was bigger, a CGM was introduced, and things settled down significantly. We were able to sleep again and finally saw some light.
As a 14-year-old, Chloe now carries the responsibilities of T1D independently. But of course she still has moments where she’ll cry because she’s over it, or because her body hurts from changing infusion sets and CGM sites.
My pathway to JDRF (and my new career)
I know I can’t take diabetes away from Chloe, but my work with JDRF in a voluntary capacity, and now as an employee, is the next best thing to me.
After our introduction to JDRF 12 years ago, we’ve been involved in fundraising, volunteering, mentoring newly diagnosed families, government advocacy, and participation in the ENDIA study.
In Chloe’s words, “JDRF has been a way to turn something bad into something good.”
Like many families, our engagement with JDRF has not only given us hope that a cure may be seen in Chloe’s lifetime but has also opened lots of amazing doors.
Some of our highlights have included family members completing the Jump skydive, speaking on stage with Olympian Stuart O’Grady at the launch of the Ride to A Cure, forming relationships with the Federal Health Minister and other MPs in connection with our advocacy work, completing half-marathon fundraisers, attending Kids in the House at Parliament House, and filming a news story with Channel 10 in Perth in 2019 following the Health Minister’s announcement of a bipartisan commitment of over $50M to the Clinical Research Network.
In the years following Chloe’s diagnosis, and as we welcomed our younger two children, we enrolled as participants of the ENDIA study, which aims to identify environmental factors which may trigger the onset of T1D in those with a family history.
Our son Jordan was ENDIA’s 13th study participant in 2013, with our daughter Paige joining two and a half years later.
While we were apprehensive about putting our young children through the requirements of the study, which included regular blood tests, stool and urine samples, and oral, nasal and bodily swabs, we were comforted by the fact that the study served as a screening process and offered us some much-needed peace of mind.
Unfortunately, earlier this month, in our ninth year as study participants, we received a call advising that Paige was presenting with the zinc transporter antibody, which sits within one of the categories of antibodies typically present when a person is diagnosed with T1D.
This particular antibody doesn’t seal Paige’s fate, but it’s something that will play on our minds – and it’s a reminder of why I left the legal industry, to now work in a paid capacity with JDRF.
From a personal perspective, I can wholeheartedly attest to the positive impact JDRF’s work has upon families. I hope I can use our positive experience to help others realise the value of the pathways JDRF has to offer.
