Ethan's Endeavour

10/12/2025

10/12/2025

Today was Ethan's presentation assembly and he was awarded an academic award for showing strong effort, growing confidence, and continuious progress in all areas of learning. Plus he received a recognition award for his leadership. Great end to his primary school years. Congratulations Ethan.

07/12/2025

Ethan went formal shopping today. He picked this black suit and was excited to finally need a size 10. ( still have to hem up the pants). Watch this space for his formal photos in a week.

25/11/2025

Ethan had his 6 monthly specialist appointments today at Westmead Children's hospital. 🩸First it was blood tests which he smashed all on his own like a boss. Next was his opthamologist appointment which went smoothly. 👀Vision is perfect, pressure was perfect, and crystals are the same as they have been for years. They say whatever we are doing to keep doing it. 💉A quick visit to the Endocrinologist to order some more growth hormone injections. Next up was an appointment with his Nephrologist 🩺 who was super impressed with everything about Ethan. His weight was 27.4kg, and his height was 134.6. Bloods all came back perfect, blood pressure was perfect, which means no changes with his medication. Fantasic news all round.

14/11/2025

09/11/2025

Ethan and his best friend Darcy. Without saying anything, I can hear you saying it. 6-7🤣

09/11/2025

Looking for a car for Ethan's year 6 farewell. Anyone know someone with a nice car thats available on 15th December.

07/11/2025

We are looking to increase Ethan's audience and would love for you all to invite just 1 friend ( more if you like) to follow his journey. This will boost Ethan's content and therefore raise more awareness for Cystinosis. Your help would be greatly appreciated. 😘

https://www.facebook.com/share/1FNxitobMZ/

Ethan was diagnosed with a very rare genetic disease called Cystinosis at 11 months of age.

07/11/2025

This week Ethan went on his first real school camp to Canberra. He was super excited and had such a wonderful time. Myself and his Grandmother went along and stayed in the same hotel but on the other side purely so we could do Ethan's growth hormone injections and his 3am medication. This was one of the conditions Ethan had about the camp. It worked out well and we only seen Ethan at bed time. He had 3 full fun filled days and was absolutely exhausted, so exhausted that he opted to go to bed early in our room instead of partying with his friends. We have to thank his teachers who really looked after Ethan's well-being and medication throughout the days he was there. This is a huge thing for Ethan to have trust in others to do his meds and eye drops. The last day really showed how exhausted he was as he started feeling unwell and instead of going with the school to Questacon, he came home with me. I hope you had a great time Ethan.

23/10/2025

Let’s get to CystiKNOWsis.💡

Cystinosis is rare, complex, and often misunderstood, but knowledge is power.

Swipe through to learn:
❓ What cystinosis is
❓ Who it affects
❓ Why it matters beyond this community
❓ How research is bringing hope

Though only about 2,500 people worldwide live with cystinosis, the science we fund is changing lives far beyond our community, from kidney health to insights into other genetic diseases.

💚 100% of donations to the Cystinosis Research Foundation fund research directly. Together, we can turn today’s breakthroughs into tomorrow’s cure.

👉 Learn more at cystinosisresearch.org

17/10/2025

Ethan made it into the Cystinosis Research Network newsletter. Check it out here

https://cystinosis.org/wp-content/uploads/2025/10/FINAL_CRNnewsletter_Fall2025.pdf