Three year-old Ethan Fenn is curious, strong and a handful for his mother, Amanda. But beneath his denim overalls is a button that supplies food directly to his stomach, and pumping through his blood are dozens of medications to prevent his organs failing.
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The Rutherford toddler was diagnosed with cystinosis at 11-months old. He is one of only 37 people in Australia, and 2000 worldwide, with the genetic condition that causes crystals to form in his organs. But, Ms Fenn said, because Ethan was diagnosed early and because of the research into genetic diseases by the Children’s Medical Research Institute (CMRI), her son will be able to live a long, happy life.
“We always stay positive and look on the brightside,” she said. “And now every time Ethan gains a kilo, he gets to eat a chocolate cake.”
Today is Jeans for Genes day and Ethan has been named as an ambassador for the fundraiser. Text “jeans” to 1997 6484 and $5 will automatically be added to your phone bill. The donation will go straight to Jeans for Genes.
