With no funding or awareness out here in Australia, it's really hard to get people on board
- Amanda Fenn
Seven-year-old Ethan Fenn won't let anything stand in the way of achieving his goals.
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Not a rare genetic condition, nor a global pandemic.
Once again, the Rutherford battler is holding his annual fundraiser to raise awareness and funds for the very condition that he lives with every day - cystinosis.
Ethan was just 11-months-old when he was diagnosed with the rare genetic condition, and is believed to be one of only 43 people in Australia living with the disease.
Cystinosis causes an accumulation of the amino acid cystine within cells, forming crystals that can build up and damage the cells.
These crystals negatively affect many systems in the body, especially the kidneys and eyes.
His mother, Amanda Fenn, said a huge challenge of the condition was the lack of support, funding and awareness in Australia.
"Every year, we head to California for a medical conference. At the conference, every family tries to raise as much money as they can and then present it to the founders of the Cystinosis Research Foundation," she said.
"With no funding or awareness out here in Australia, it's really hard to get people on board. We did the same thing last year and we ended up raising about $4500."
This year, Ethan's target is $4604.
The figure comes from the little battler wanting to raise 1c for every tablet that he has had to take since his diagnosis to the day he turns 8 on September 30.
"This year, we are doing the same thing but starting earlier. When we spoke to Ethan about it and he said 'I take so many medicines' so we worked out how many he took since diagnosis," Ms Fenn said.
"[The figure] is how much Ethan wants to present. Ethan also collects cans and bottles [and takes them to Return and Earn] ... so whatever money we get with those then goes towards the fundraiser."
Not only does Ethan collect cans and bottles and takes them to Return and Earn machines but he has also been an ambassador for Jeans for Genes Day.
"Every time we receive a donation, Ethan is straight onto the computer wanting to say thank you," Ms Fenn said. People can keep up up to date or donate to Ethan's fundraiser by visiting 'Ethan's Endeavour' on Facebook where there is a donation link.
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