Will Cullen, 11, from Western Sydney, is representing Australia at the JDRF 2017 Children’s Congress in Washington, D.C. Will joined JDRF Australia’s Advocacy program at the tender age of three, and is still hard at work seeking MP engagement to improve the lives of people with type 1 diabetes! He’s grown up to add his own voice to his family’s advocacy efforts, and a rather large one at that! , Why don’t we let Will tell you the story of how he came to be chosen for this special opportunity…
I don’t remember getting diabetes because it was just after I turned two, but my mum told me that I was very sick. My Mum and Dad took me to hospital and we had to wait so long, we were about to go home when I vomited on my Mum and we decided to stay. They thought I just had a tummy bug and would keep an eye on me overnight. But then Mum said everything changed when my blood tests came back and they realised how sick I was. My sugars were very high (I was in diabetic ketoacidosis) and they told my Mum I had type 1 diabetes. I got rushed to the Children’s hospital by ambulance. I was in intensive care for three days and in hospital for nine days. My parents and family learned how to give me needles and check my blood sugar. I went on a pump after four months; Mum said I hated the injections and pump set changes and I had to be held down and cried every time.
Diabetes has meant I have been able to do some really cool stuff. Mum tells me that she can tell that I don’t like having diabetes sometimes, when I get cranky when I have to do things for it or not eat everything I want. But when I think about having diabetes I feel like it makes me unique and I like that.
I don’t really remember what it was like to not have diabetes and maybe that’s why it doesn’t worry me too much. I just think that I may as well like something that I have to do every day!
It will be my 10-year ‘dia-versary’ in May next year, and so far my diabetes hasn’t really stopped me doing anything. I’ve only been in hospital a couple of times and not for very long. I still get to play soccer, go out riding scooters with my friends, go to parties and sleepovers and diabetes comes with me everywhere. Sometimes that means Mum comes with me, but mainly it means that I still have to remember to check my sugars, eat and bolus… which I sometimes forget!
I have been a JDRF Youth Ambassador since 2008 (when I was only three) and have been lucky enough to go to lots of fun places because of this. I’ve been to Kids in the House which is a program where young people go to Parliament House in Canberra and meet some politicians and ask the Government to give us funding for research. I met MP Russell Matheson who helped us by making a speech in Parliament about the need for more funding for diabetes. This year, I met Prime Minister Malcolm Turnbull. He asked me lots of questions about the pump and promised that the government would spend $54 million dollars to fund CGMs (continuous glucose monitors).
One of the things I really like to do is raise money for diabetes and talk and educate people about it.
The local newspapers have done lots of articles talking about our fundraising efforts and raising awareness of type 1 diabetes. Our family is very involved in fundraising. Our team “Will’s Warriors” have done JDRF One Ride twice and JDRF One Walk for the last eight years. Our family has raised over $150,000 for JDRF.
I think that research programs for type 1 diabetes and new technology are important because it would be great to find a cure and because it makes life easier for me and other kids like me. The new technology, like CGMs and pumps, makes my life easier and I know it makes my Mum’s life a bit easier too. The CGM lets me know what my sugars are all the time and this year, it meant that I was able to go to school camp without my Mum. I can be more like my friends and go out riding with them. It helps overnight too, because I’m pretty good at knowing when I’m low during the day but I often sleep through my hypos at night, and my parents have to check on me. The new technology is making this better for them and hopefully it will get even better with more research.
Mum has told me about some of the new research and technology, like the artificial pancreas, where I wouldn’t have to really check my sugars or bolus and I think that would be amazing.
I’m very lucky to be able represent Australia at the JDRF 2017 Children’s Congress in Washington, D.C. I would love to talk to other kids from other countries about how they do their diabetes and tell them about what it’s like for me in Australia. I also think that the adults who make the decision about funding and research are more likely to listen to kids about what it’s like living with diabetes than to other adults. That is why I think it is great to be given the opportunity to go to the Children’s Congress.
JDRF 2017 Children’s Congress will take place on 24-26 July 2017, in Washington, D.C. Learn more about JDRF Children’s Congress.