Rutherford’s Ethan Fenn is fighting a disease most kids his age have probably never heard of. 

The eight-year-old has cystinosis, a rare genetic disorder that causes an accumulation of the amino acid cystine within cells, forming crystals that can build up and damage the cells.

Without a cure, it’s a battle with no end in sight.

To manage his condition, the youngster has to take eight different medications and have eye drops every six hours to avoid organ failure, but he doesn’t let it hold him back. 

In February he will graduate to a black belt in karate and he’s never been scared to share his story. 

Since 2019, Ethan has been fundraising for cystinosis research and enjoys educating others about his rare condition. 

“I love being famous and having so many followers knowing about cystinosis,” he said. 

His mum, Amanda, is incredibly proud of his efforts and says they are working hard to raise funds to help them travel to a medical conference in California. 

At the Cystinosis Research Foundation’s (CRF) Day of Hope Ethan will have the opportunity to connect with other people, have some tests done and be updated about the search for a cure. 

“Attending these conferences gives us all hope and it allows Ethan to hang out with other kids who suffer the same disease,” Amanda said.

“Ethan says ‘he feels normal’ when he is there because everyone has the same smell as him (his medication has an odour that seeps through his skin) and no one treats him differently.

“The conference allows us as his parents to find out in-depth information from doctors and researchers who are working on finding a cure and his siblings also spend time with councillors and other siblings as this affects them as well.”

To get to America will not be an easy task though, Amanda says it will cost them thousands of dollars to attend the life changing summit. 

“Every year we aim to raise as much as we can to get our family to the conference and this is expensive,” Amanda said.

“To pay for flights, accommodation, passports, hire car, insurance etc we are looking at about $20,000. 

“The last time we attended back in 2019 we could only afford to take Ethan which was devastating for the others and Ethan seemed lost without them. 

“Our fingers are crossed we can attend this year and we are hoping COVID doesn’t get the better of us [so we don’t have] to postpone our trip until 2023.”

Aside from an online fundraising page, Ethan also raises money through the Return and Earn scheme, selling chocolates and many other avenues. 

Amanda says collecting cans and bottles and recycling them has the biggest impact. 

“Ethan and his siblings started collecting our cans and bottles from home and recycling them,” she said.

“We decided to put up a post on our community Facebook page asking if anyone had any cans and bottles laying around that we could collect to help Ethan reach his goal.”

According to Amanda, the response to that post was overwhelming, they now have supporters who save their containers for Ethan to collect each month. 

“Over the last two years Ethan has recycled over 11,000 cans and bottles, and raised over $1,000 for the CRF,” Amanda said. 

Moving forward, Ethan is hoping to influence more people. 

“Ethan would love to reach 2,000 followers on his Facebook page and raise as much awareness as possible for cystinosis,” Amanda said.

“We are also hoping to hold his annual fundraiser in August this year if COVID allows us too.”

To stay up-to-date with Ethan Fenn’s journey follow Ethan’s Endeavour on Facebook. To donate, go to the family’s GoFundMe page.

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