Family

"Baby Keegan" Maley is all grown up and has big dreams for the future

Young Keegan made national headlines as a child because of a rare medical condition. Doctors thought he might never be able to walk or talk. But he has defied the odds and continues to do so and his mum Michelle couldn't be prouder.

By: Hayley McLarin

Keegan Maley learnt to walk with a toy lawnmower. And mowing lawns may be what helps steer him into adulthood too.

"Baby Keegan", who became a local media sensation in his childhood, has turned 16 and if the Waikato teen is to think about flying the coop, he needs to be earning and self-sufficient.

But as his mum Michelle reads these words, you can imagine her heart racing. She's spent Keegan's entire life being his protector, his biggest advocate and by her own admission, possibly the one holding him back.

"I will always want to wrap him in cotton wool, but I know I can't, so it's about setting realistic boundaries," she says.

Keegan was born with a rare condition, multi-sutural craniosynostosis, which means his skull keeps growing, but his mid-face stopped developing at just six months. He couldn't stand the daylight, struggled to breathe and had no nasal cavity.

By the age of five, he had endured 19 operations, including having part of his skull removed and all the bones in his face broken so a titanium frame could be bolted on for nine weeks to train the bones to heal in a new position.

When he was a baby, doctors said he may never be able to sit up, let alone walk or talk. But Keegan proved them wrong. This year he turned 16 and last month took his first tentative steps into getting a job – doing work experience in a mechanic workshop, where he loved cleaning engines.

"We wanted to see how he would cope working," 44-year-old Michelle says. "Keegan is still obsessed with mowing lawns. He would love to have a lawnmowing business.

"Academics are hard for him, but give him things to do and he is really switched on. He needs some flexibility because he does get fatigued, but he loves lawnmowing and does a brilliant job – you should see our lawns!"

Just a few months ago, Keegan had his 29th surgery, this time to reattach the muscle to his palate to help him speak more clearly. However, it was aborted 40 minutes in when specialists realised it wasn't going to be successful. It was Keegan's first operation in six years.

In 2012, life had finally settled down in Hamilton for Michelle, dad Kym and their four children, Brock, now 23, Sage, 21, Konna, 19, and Keegan. But then everything changed in a way that Michelle could never have envisaged.

"Kym and I broke up," she says. "I don't even know what happened – it just ended. We lived in chaos and were so busy looking after Keegan and our other children that we didn't look after our relationship.

"I didn't think we would be one of those couples – we were childhood sweethearts, married 19 years and together 23. But separating was the right thing to do."

Two years later, Michelle was at a party and met the man she now shares a home with in Tuakau, south of Auckland. It brought about a huge shift in many ways.

As a single-income family, Michelle had been juggling two jobs to make ends meet.

"I was on my own for two years," she tells. "We would hunt for coins down the couch to buy a bottle of milk. We were the fish-finger family. I was working at the primary school as Keegan's teacher aid, then I'd sew at home until 2am."We'd go around the neighbourhood dropping off pamphlets and collecting their scrap metal to sell."

It helped teach Keegan the importance of hard work. "If he asks for money, we put a value on it," she says. "He is very good at deciding what he will do to earn it."

Michelle is aware she can't keep Keegan wrapped in cotton wool, no matter how much she'd like to.

"We have nearly lost him so many times, but I have decided to let him have a life," she explains.

"When he was seven, he had an accident at school and it took me 20 minutes to resuscitate him. He was knocked over and his skull is still so delicate, he hit his head and it was instant arrest. It was the third time I have resuscitated him.

"Keegan had two weeks in HDU with two brain bleeds. At that point, we were told every trauma you have compounds, so next time there's a greater chance we won't get him back.

"I didn't want him going anywhere without me. But I'm slowly letting him do more.We talk about realistic boundaries and taking control of what you can. Putting safety nets around him but not constraining him."

That's included snow-boarding in Queenstown, school cross-countries and competing in the Tough Guy challenge, an extreme off-road running event.

"Keegan has plenty of reasons to not do things, but he gives everything a go," Michelle says proudly. "Tough Guy nearly killed me – I had to do it with him, with a Medipak on my back. Those 'realistic boundaries' are pretty broad!"

And now it's time for Michelle to be her own person."I was Keegan's teacher aid for all of his school life until last year. Me leaving his high school was the biggest thing I've ever done.

"But I take time for me now. For the first time I am not only Keegan's mother – I am also Michelle and that is so great."