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Leeten Young is a happy, creative eight-year-old who loves Minecraft and animals. He’s also got Ehlers-Danlos Syndrome (EDS), which is pretty limiting when you’re a kid trying to muck about with everyone else your own age.

Ehlers-Danlos Syndrome effects connective tissue in various ways. People who have it often don’t show visible symptoms and can slip through cracks in the support system. “We had a really tough two years with lots of hospital visits,” explains Leeten’s mum, Stacey. “He’s also had a hard time at school, because he can’t keep up with the other kids. “His body doesn’t regulate his temperature properly, so he gets really, really cold – so cold it physically hurts him – or really hot. He also bruises incredibly easy and gets really itchy. He’s also super flexible, which puts him at risk of his joints dislocating.” EDS patients who bruise easily are at risk of picking up blood clots under the skin, while unstable joints cause frequent pain. Fatigue is almost universal among sufferers of Ehlers-Danlos. Leeten didn’t learn to walk until he was just over two years old and suffers from ankles that turn in on themselves. He sees a rheumatologist in Christchurch as well as a physio and a dietitian, who put him on a weight-gain diet (which he loves, because he’s allowed to eat high-calorie foods like ice cream and chocolate every day!). While Leeten can’t do the physical things the other children do, that hasn’t held him back. He’s obsessed with Minecraft, loves writing and goes through a drawing pad every week. Documentaries about animals keep him and Stacey entertained on the weekend; David Attenborough is a family favourite. When Stacey let Satan’s Little Helper know about Leeten’s condition, and told us about his love for animals, we knew we had to do something to put a smile on his face. With those two facts in mind, there was only one solution! We organised an annual pass to Orana Park Wildlife Park for him and his mum. Leeten’s already been once and plans to make the most of it this summer. “I loved it, the zoo is one of my favourite places to go because I love animals,” he says. “The best thing I saw were the two gorillas and we’ll see the kiwis next time. “I can’t wait to go back as soon as it’s nice! If I had the pass for the whole time I was alive, I would probably go every day in summer!” It’s too early to tell whether a gorilla a day will keep the doctor away, but at least Leeten has a way of doing something he loves.


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