Ethan Fenn's Story

“To Ethan, cystinosis is just a part of his life, it will not keep him down, nothing will.”


Ethan was born September 2013, and everything seemed fine. However, as time went by, we realized that he wasn’t thriving like a baby his age should be. By the age of 11 months, Ethan was not crawling, talking, or even sitting without support. Our multiple visits to the hospital resulted in diagnosis of dehydration, but we knew there was something seriously wrong. After pleading with the paediatrician, we were admitted to the hospital again and Ethan went through three days of being on a drip, having seven blood tests, four urine tests, two stool tests, and several different doctors coming to see him. We were eventually referred to the Renal Clinic at Westmead Children’s Hospital because they found that his kidneys were not working properly.

On the 19th September 2014, two weeks before Ethan turned one year, we were told that he had cystinosis. We had never heard of it, so we sat at the hospital and looked it up on the internet. It felt like our hearts had been ripped out and our worlds were falling apart. It was one of the darkest moments of our lives. We held Ethan so tight promising him we would get through it together.

Ethan is now on eight different medications every six hours and this is likely to increase throughout his life. About four months after his diagnosis, we were informed that Ethan was still not putting on enough weight and that he would need the gastrostomy tube surgically inserted into his little belly. It felt like we had been knocked down again as we had been doing all we could to help Ethan put on weight. Our fears were eased as the gastrostomy tube proved to be a huge blessing. and only six weeks later, Ethan finally took his first steps, and nothing has stopped him since then. Ethan has thrived, and we weigh in every single night as he loves to see every gram he puts on. Each night he has gained weight, he can’t wait to tell the family so we can all do a celebration happy dance.

When Ethan turned three, he started joining his three older siblings in karate dojo four days a week determined to become a junior black belt before his tenth birthday. Skip forward three years and Ethan has already passed his yellow, orange, green, and blue belts, and is now on his purple belt. He has only red and brown to go before he attempts his black belt grading. This year has seen Ethan not only excel in his martial arts, but also graduate from his kindergarten class where he did amazingly well, both academically and socially. He has continued to develop his wonderful artistic talents, he takes on any challenge with confidence and pride. To Ethan, cystinosis is just a part of his life, it will not keep him down, nothing will.

Thank you for your good wishes and support,
Amanda, Chris, Alizabeth, Phoenix, Jaxen, Morgan, Ethan Fenn

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