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One in a million

Cooper McGlinchy is a unique little boy. He’s confounded doctors, experts and his own mother, yet he remains blissfully happy.

Cooper’s case is so rare that he’s being studied by the University of Otago’s rare disease department. “He has some type of syndrome,” explains his mum Megan, “we just don’t know what it is yet. He’s on a second round of advanced testing, but it could take years to get a result.” Cooper is nearly two years old but his Global Development Delay means he’s got the cognitive ability of a 6-month-old baby. He can’t walk or eat by himself and he’s non-verbal. “Cooper has hypotonia, which means he has low muscle tone throughout his whole body but mainly in his trunk and throat. That means he can’t feed himself, while his development delay means he isn’t able to speak yet.” You’d think that being trapped in a body without the ability to talk or eat would make Cooper a little grumpy, but he continues to defy the norm. “He's so in his own little bubble that he’s just the happiest little kid. Every doctor is amazed that he doesn’t cry or have temper tantrums. We’re really blessed that he is the way he is, and that he’s without pain.” But Cooper is also determined little boy and has ticked off some pretty important milestones. He can crawl and has started to play with Megan and his sister Hazel. Standing unaided is his next big achievement and, when he does, you can be sure his ‘biggest cheerleader’ will be there to celebrate. “Hazel yells and screams when Cooper does something new for the first time. She loves him to bits and she’ll even look after him if I need to wash the dishes or cook tea – but she doesn’t change his nappies yet,” Megan laughs. “I’m working on that.” Despite all the love and support between them, Megan, Cooper and Hazel face a number of challenges. Due to his hypotonia, Cooper can’t join his mum and sister when they go out the house to have some fun on their bikes. To allow the whole gang to make memories together, Satan’s Little Helper purchased a trailer for him to sit in that Megan can hook up to her bike. “We used it for the first time last weekend and it was such a good day out! Cooper loved being outside and he enjoys the movement of the trailer – he understands it’s fun and wants to keep going. In fact, he gets grumpy when you stop peddling! We cycled about 3km and I had to call it quits, because the extra weight on my bike was pretty tough on the legs.” Normally Megan would get a sitter to look after Cooper when she’s out with Hazel, but now they don’t have to feel rushed to get back home, plus it’ll save them a cent or two! “We can take our time on our days out now. There’s a 14km track near us that we haven’t been able to ride, but we plan to tackle it soon.” The trailer arrived at a good time; Cooper needs a pick me up as he has surgery planned to remove his tonsils and adenoids, plus he needs to have grommets inserted. Now he’ll be able to look back on this period in his life with a smile. “We’re always taking photos of our days out and now Cooper will be in them. That means the world to me,” says Megan.

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