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From Diagnosis to Consumer Representative – Danae’s journey to making a difference

Recognising the signs of type 1 diabetes (T1D) can be tricky. Often put down to growing pains, a virus or “something going around”, a diagnosis can take some time if children aren’t severely sick and attend an emergency department.

Sometimes, a parent’s gut instinct knows there is something more going on for their child that triggers the need to seek medical attention.  This is exactly what happened for Danae and her son Jack one morning in December 2021.

Jack came into the kitchen crying that morning saying his tummy hurt. Danae knew something wasn’t right. Her motherly instinct told her Jack was in trouble and she needed to get him to hospital straight away.

Relying on a family friend to take her daughter to school, Danae drove Jack to hospital not knowing what to expect next.

“We were at Fiona Stanley Hospital for 5 hours where Jack was poked, prodded and finger pricked. Drs still didn’t know what was causing his tummy pain. We were told his blood sugars were slightly elevated and he had something called ‘ketones’. I had no idea what that was” says Danae.

After multiple tests and doctors telling them they could go home, then other doctors saying no they couldn’t, one doctor finally asked to speak to Danae outside of Jack’s hospital room. This was the moment that life changed for Jack, Danae and the rest of their family. A diagnosis of type 1 diabetes was given and Jack was transferred to emergency at Perth Children’s Hospital.

Danae said, “We didn’t know why this had happened to our beautiful son. As a diabetes doctor entered the room, he handed me a file and said “This isn’t your fault and it’s not Jack’s fault. But we don’t know what causes it”. Tears started to stream down my face and I realised this was actually happening”.

Jack spent his first night in hospital since being born and given his first injection of insulin; the hormone that regulates blood glucose levels that his body can no longer make on its own.

After eight days in hospital, learning to do injections and monitor blood glucose levels, counting carbohydrates, setting alarms and using technology to keep their son alive, Danae and her husband Ben took Jack home to start their new normal.

“I was so glad I chose to follow my mummy gut instincts. We caught this nasty disease early and Jack didn’t end up with Diabetic Ketoacidosis in intensive care. The support from family and friends when Jack was diagnosed and now in our new normal is absolutely valued and appreciated. We learnt you don’t really know something until you are living with it”, says Danae.

Still on the learning journey of T1D, Danae knows that more awareness and research about this life-long, life threatening chronic illness needs to be supported.

“This is why I became a Consumer Representative and a member of the Community and Consumer Involvement Committee with the Rio Tinto Children’s Diabetes Centre at The Kids Research Institute Australia. I get to support research and be apart of it, as well as giving valuable insight as a parent and carer. Being a part of an amazing group through an exciting time when everything is evolving and changing”, Danae shares.

Every parent caring for a child that lives with T1D lives in hope that a cure will happen one day. In the meantime, Danae says,

“I hope in the next 10 years more ways will be discovered through research to support families everyday, helping children to live their best life and be the amazing people they were born to be”.