Advocating with Ethan and Kylie

Q. Hi Ethan, can you tell us a little about you and your interests?

 Ethan: I’m 10 years old and I enjoy keeping active. I love swimming, tennis, running, cycling, and just being active every day! I regularly participate in 5km park runs and medium distance trail runs in SA. Aside from sport, I love real estate, floor plan design, and interior design. One day I would love to work in the real estate world, either as an architect or interior designer!

Q: And Kylie, how did type 1 diabetes come into Ethan’s life? How would you describe his journey with T1D so far?

Kylie: Ethan was diagnosed with diabetes at four years of age when he was in Kindergarten. It came as a complete shock to our family as we had no previous family history. Ethan spent 3 days at diagnosis in hospital, only to catch the Rotavirus and become ill when he was ready to be discharged! There was nothing like learning sick day management from the get-go!

He spent 6 months receiving his insulin via injections (which mum and dad did) and then moved to his first insulin pump at the age of 5. Insulin pump therapy was a wonderful new management phase for us as it gave Ethan a lot more independence. After a couple of years, Ethan upgraded his pump to the t:slim X2 insulin pump – the transition was easy.

We think it is such an intuitive and easy to use pump as Ethan is able to independently operate all the pump functions, which gives him a lot of freedom. In particular, we love the basal suspend function from Basal-IQ technology for the t:slim X2 as it has been fabulous for assisting with some impending lows.

Ethan also wears Dexcom G6 CGM. Initially, we self-funded CGM as it gave Ethan much greater confidence to exercise and live his life to the fullest. When the government announced CGM funding for those under 21 years old, we were so excited knowing that Ethan could access this amazing technology without worrying about the financial burden for some years to come.

Q: What features from Dexcom G6 do you and Ethan particularly value when it comes to his diabetes management?

Kylie: The Dexcom Share feature is fabulous. It allows Ethan to send his sugar level to us, his parents, teachers, grandparents, and carer’s etc. This constant flow of data allows Ethan to tackle his daily life with greater confidence and certainty in relation to his diabetes management. It has provided more freedom for him to interact independently with his family/friends while we, as parents, can monitor remotely.

The Dexcom Share feature is great at school! It allows teachers to follow Ethan’s glucose levels while he is in their care, and it enables Ethan to confidently participate in things like cross country running at school where he may be some distance from the teacher, yet the teacher is always in the know about what his sugar levels are doing.

Ethan is also able to make informed decisions based on CGM readings and act appropriately to prevent troublesome situations.

Ethan: Dexcom G6 is really good. I love that I only have to change it every ten days and it is so easy to put on. The screen on my phone has a big number that I can read clearly and updates every 5 minutes. It is so good not having to fingerprick regularly to know my blood glucose number. I find it very reliable and often forget that I am wearing it.

Q. Ethan, you’re also using the t:slim X2 insulin pump to manage your glucose levels. How would you describe your experience pumping?

Ethan: I like using the t:slim X2 insulin pump because it means that I don’t have to inject myself with needles every time I eat. The t:slim X2 also suspends my insulin when I am trending low which is good because I don’t need to treat myself for as many lows.

Q. And Kylie, for you – what features do you love about the t:slim X2 insulin pump?

Kylie: We love the Basal-IQ technology suspend feature which helps with unpredictable lows. We also love the Dexcom Share feature which enables 10 of his family members to be in tune with his glucose level all the time! Ethan uses the Dexcom G6 model which also means there are no fingerpricks for calibrating! This is an absolute massive win for anyone living with T1D!

The t:slim X2 insulin pump and Dexcom G6 CGM have absolutely helped Ethan achieve his life goals. There is no way that we would feel comfortable with him attempting long distance trail runs without CGM and the pump. The features that the t:slim X2 insulin pump and Dexcom G6 offer, mean that we can faithfully embark on challenging activities which would have otherwise caused us great uncertainty.

Q. We’ve heard about your previous advocacy efforts for the T1D community. Why is this important for you to do?

Ethan: I have done a lot of advocacy work about T1D over the years. In 2018, I also went to JDRF’s Kids in the House in Canberra with other children from around Australia living with T1D.

I have also helped organised casual days at our school to create more awareness about T1D and I regularly do talks to the students at my school, both in my class and also in my school house. My mum and I have presented these talks so that other students understand diabetes a bit more and why I do the things I do.

And, last year my mum ran 100km over a long weekend to raise money for JDRF, and this year, both my parents are participating in a 24 hour team bike riding event!

Kylie: Our family is very passionate about creating awareness of T1D, as there are many misconceptions out in the community about T1D which can be frustrating! However, knowing that our family had little awareness before Ethan’s diagnosis makes it easier to stay patient and work hard to spread the word about the challenges Ethan faces daily. Ultimately, I think awareness can help save lives by taking away some of the stigma associated with diabetes.

Q: And for those families who have recently experienced a T1D diagnosis, what advice would you give to them?

Kylie: My advice would be to take time to grieve the end of the way things used to be, research to keep yourself informed of the best practices out there, and know that you are not alone.

The first year after diagnosis is TOUGH! Learning the new language that comes with T1D can be overwhelming. Remember to ask lots of questions and seek help when you get stuck or confused. During the first year, you will learn how to manage highs, lows, count carbohydrates, adjust dosages, manage settings, and so much more! I promise it does get better and this new life will become your new ‘normal’.

Also, there are many wonderful support groups on social media. When newly diagnosed families feel ready, I suggest joining these groups as they may offer networks (friendships with those going through the same thing), tips and tricks, as well information on all things T1D.

Q. Lastly, Ethan, what advice would you give to others living with T1D?

Ethan: My advice would be to be brave and be strong. Be proud of the fact that you live with diabetes, and even though you have diabetes you can live happily with it, do anything, and be strong. Always think positive and never give up, even though it may get tough at times.

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ALWAYS READ THE LABEL AND FOLLOW THE DIRECTIONS FOR USE. Read the warnings available on amsldiabetes.com.au/resources before purchasing. Consult your healthcare professional to see which product is right for you.

^*If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions.

Note: For more information on the NDSs CGM Subsidy Initiative and to see the relevant eligibility criteria, please visit ndss.com.au/living-with-diabetes/managing-diabetes/continuous-glucose-monitoring

Testimonial Disclosure
This testimonial relates to an individual’s response to treatment with our products and has been edited to ensure it is consistent with the products’ indication(s). The testimonial does not provide any indication, guide, warranty or guarantee as to the response other persons may have to the treatment. Responses to treatment with our products may differ. It is important to consider individual circumstances and consult with your healthcare professional before considering any changes to your diabetes management.

Dexcom, Dexcom G6 and Dexcom Share are registered trademarks of Dexcom, Inc in the United States and/or other countries