Diabetes Advocacy: A Family Affair – by Amanda Lenehan

Type 1 diabetes doesn’t just affect the person who has been diagnosed. Especially for children, it becomes a family affair. Amanda from Australia talks about how her son’s diabetes diagnosis motivated her into diabetes advocacy and book writing! 

My Type 1 diabetes journey started seven years ago when my eldest son, Isaac, was diagnosed just prior to his second birthday. The first few months were a very difficult time and to add to it, within six months of diagnosis I had our second child. Not to stop us, a month later we did our first JDRF Walk we raised over USD$3,000. Here is the point where I threw myself into fundraising, campaigning, mentoring and advocating for change. I wanted the general public, the media, family and friends to understand what Type 1 diabetes is, what it entails, that it is a serious condition and needs to be understood.

I wrote to anyone and everyone who misrepresented Type 1 diabetes, and those who forgot to preface ‘diabetes’ stories.  I was asked to go on the news and explain my story; I have had articles printed in newspapers and magazines due to me writing in and setting the record straight for Type 1 Diabetes. At every opportunity I explained what Type 1 was about. I showed Isaac not to hide his Type 1, to tell people what has to be done to keep him alive.

I continued to fundraise throughout this time. I have skydived a couple of times, run garage sales, and now I am joined by a group of mums from Isaac’s school. We’re called T1 Troopers, and we have put on discos and race days to raise money not only for JDRF but the ENDIA study and St. Vincent’s Institute for Type 1 research, and to Barwon Health Paediatric Diabetes for our local community, helping send kids to diabetes camps and cooking programs.

I have since realised that all of this was my way of grieving; grieving a fully functioning pancreas, grieving a child’s childhood and a family’s relaxed way of life. Saying that this way of grieving has given me opportunities and growth that I had never had thought I’d accomplish. It has set me and my family on a different path.  

Isaac, although at the age of eight, may not realise all that he himself has accomplished, has done many things due to his diagnosis. He has had meet numerous people, with and without Type 1, and shared his story – our story. I like to stay behind the scenes and let Isaac’s character and charisma advocate and raise awareness. My fundraising and advocating has taken us to the Melbourne Cricket Ground (MCG) where Isaac, was given the great honour of running out through the banner with Joel Selwood. We’ve been to Federation Square, Melbourne to meet Team Novo Nordisk, the world’s first pro-cycling diabetes team, to be at the filming of a JDRF ad with Sir Ian Botham and to get to know number one draft pick for Australian Football League (AFL) 2014, Paddy McCartin. It has also given us as a family the opportunity to represent our community at government announcements and meetings.

When Isaac started school I noticed there was a lack of resources for kids that explain Type 1 diabetes. So, continuing on my mission to advocate and educate, I decided to give writing a go. I wrote Peeking into Type 1 diabetes to help Isaac explain Type 1 to his new friends. The hospital jumped on board and gives them out to the newly diagnosed. I get overwhelmed sometimes to think that this little book I wrote for Isaac has helped so many.

I don’t see his diagnosis as a positive or a negative, it just is! We deal with it every day, some days better than others but it is now what we call life. We can laugh about it and cry about it, we also try to make life easier for others dealing with this diagnosis by showing them it can be done.  It can be a struggle sometimes but with good friends and fabulous support we can enjoy life at its fullest.

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