Rachel: Saving my son's and my partner's lives costs us $760 a month.

7 years ago on 14th March, my son was diagnosed with type 1 diabetes, age 2. A day I will never forget, the day I hoped would never come. The signs were so subtle at first. We didn’t notice the weight loss, the thirst. When he drenched his nappy twice in one night, soaking the bed, I looked at my husband and we both knew. His dad was diagnosed age 6 and we had been together 15 years, so I knew how to be a wife of someone who I loved with diabetes. My heart broke that I would now also have to be the mother of a diabetic child.

I knew what it was like to wake up next to the man I loved who was so low he didn’t recognise me, feeding him jellies or juice until he stopped sweating and testing his sugar through the night. Now I was going to have to do this with my baby boy. The day Jackson was diagnosed was one of the worst days of my life because I knew what that meant for him, his future, what he would face through life. The endless blood tests until his little fingers were so sore and scarred they wouldn’t bleed and I would need to use his toes; going on every school trip and camp with him because the responsibility would be too much; facing the prejudices around type 1, the discrimination and most of all the days when he would just sit and cry because he didn’t want diabetes anymore. The 1st night in the hospital I played this all out in my mind while he blissfully slept in his cot, waking every 2 hours to test him, not wanting to hurt him but knowing I had no choice but to stick needles into him repeatedly.

Then something amazing happened, we had the chance to go on the insulin pump. It came with a funded continuous glucose monitor in the UK. I could go to bed knowing he would be safe; the alarm would wake me if he needed me. I had to change the needles every 3 days, not inject him 6-8 times a day. We learnt to be a pancreas, anticipating what he needed, correcting him whilst he was still playing. He gained a sense of normality. I could see his future, a future where his bionic pancreas let him just go about his day, when it would catch the highs and lows without him having to stop what he was doing and eat or bolus a correction dose. With each upgrade we were closer to a normal life.

We moved back to NZ in 2020. Whilst we were able to get a funded pump for him, we have to pay for his sensors. The thing that saves his life and his dad’s costs us $760 a month. We would find this no matter what because of the benefits it brings to us as a family. Jack is a happy healthy 9-year-old, a Cub Scout, an active boy who will climb everything, who has lots of friends, who has been to many places in the world, and had lots of adventures. He may be diabetic, but it does not define him, we don’t let it stop us. We have taught him to dream, to reach and that he can achieve anything. He has so much to contribute, and we will make sure that he can.

Many children out there are not so lucky. There are parents putting their kids to bed, not knowing if they will be alive the next day or getting up several times a night to test them to be sure and that is exhausting whilst trying to hold down a job. Many go part time or give up work to support their children which leads to financial hardship for the family and not being able to contribute their skills to the community. It is inequitable that a family should live in fear because they can’t afford the technology that would improve their quality of life as a whanau. There is a better way. All people with Type 1 should get access to this technology if they want it. Financially, funding a sensor leads to less complications, less time off work, less money on test strips. This condition affects the whole family emotionally, physically, financially and socially. PHARMAC funding would change the lives, not only of those with diabetes but also those that lived with them and love them.

Rachel

Wife and mum to 2 incredible people living with type 1