Ethan's Endeavour

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

Happy 13th birthday Ethan. We hope you have the best day buddy 🎊🎉
30/09/2026

Happy 13th birthday Ethan. We hope you have the best day buddy 🎊🎉

Can you set your alarm for 3am tonight and wake up with Ethan? Take a selfie and tag 5 friends on this post to help rais...
18/09/2026

Can you set your alarm for 3am tonight and wake up with Ethan? Take a selfie and tag 5 friends on this post to help raise awareness for Cystinosis.

Please share and help get the word out.

These photos were taken on the eve of Ethan's diagnosis 12 years ago. We were waiting for the doctors to discharge him a...
17/09/2026

These photos were taken on the eve of Ethan's diagnosis 12 years ago. We were waiting for the doctors to discharge him and it's the following day our lives changed forever. Having a child with a rare disease is hard but it certainly teaches you not to take things for granted.

Who's coming?
12/09/2026

Who's coming?

🤞More amazing news🤞First child in the stem cell transplant has seen their cystine levels decrease by a factor of 10. Thi...
22/07/2026

🤞More amazing news🤞
First child in the stem cell transplant has seen their cystine levels decrease by a factor of 10. This is AMAZING and gives hope of that cure we are all waiting for. Thank you beautiful girl and her family and of course CRF. This is why we fundraise for Ethan.

Ethan attended his 6 monthly appointment to at Westmead Children's Hospital. The Opthamologist said Ethan's eyes are gre...
09/06/2026

Ethan attended his 6 monthly appointment to at Westmead Children's Hospital. The Opthamologist said Ethan's eyes are great and to keep up with the eye drops. Once again Ethan is the talk of the department and always has a few doctors come in to check out the crystals he has. Ethan was asked if he would like to be apart of the doctors final exams, meaning they would be given Ethan's case and they will have to solve it by what is seen when they assess his eyes. Of course he said yes.
Then off to pharmacy to collect his life saving medication and eye drops but once again they were not ready ( they only had 12 days to have them ready for us). They stuff up his meds every month without fail, to the point we have bets on them 🤣.
Then lastly off to see the renal team who shared Ethan's blood results taken first thing this morning. His potassium levels were low and his sodium was a little low. This explains why he has been unwell and off school the last week.

Today is Cystinosis Awareness Day.This is my son Ethan. 💚Cystinosis is a rare genetic condition that affects children an...
06/05/2026

Today is Cystinosis Awareness Day.

This is my son Ethan. 💚

Cystinosis is a rare genetic condition that affects children and families every day. Today I’m sharing Ethan’s photo to help raise awareness, understanding and support.

Please like and share this post to see how far we can get with raising awareness for Cystinosis.

Ethan had his 6 monthly follow up appointment with his endocrinologist at Westmead Children's Hospital yesterday. He has...
21/04/2026

Ethan had his 6 monthly follow up appointment with his endocrinologist at Westmead Children's Hospital yesterday. He has grown 17cm since starting the growth hormone. She is happy with his growth and will see him again in 6 months.

Ethan just chilling on a Sunday while his other brothers are at footy. This kid cracks me up 🤣🤣
29/03/2026

Ethan just chilling on a Sunday while his other brothers are at footy. This kid cracks me up 🤣🤣

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Rutherford, NSW

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