Maddie, Ziggy and a demon

Dragon lover Maddie McKenzie. Photo: Bruce Barnard.

Maddie Mckenzie didn’t wish for anything fanciful – she didn’t want to be flown to the moon, or Disneyland, be a millionaire, or meet Katy Perry.

When the Make-A-Wish Foundation offered to create a little hope, a little happiness for this sick 10-year-old, Maddie settled for a bearded dragon – a lizard called Ziggy Stardust.

“I don’t like girlie things,” says Maddie. “I am a dragon lover.” And she doesn’t have a little girl’s bedroom, she sleeps with the dragons. Her room is a weyr or dragon’s den – no pink or popstars – just floor-to-ceiling pictures of dragons, dragon mobiles and models of dragons. And her own live bearded dragon in a huge custom-built tank.

It says something about this kid with eyes bluer than the deepest ocean and a very cheeky dusting of freckles, who loves bugs and would find something adorable about a cockroach.

“She is a special little girl,” says mum Anita Barnett. “Very, very special.”

It would be understandable if Maddie’s Make-A-Wish had been for a moment of magic – for someone to have waved a wand and an evil, wicked demon slain or vanquished. That demon is called DIPG – diffuse intrinsic pontine gliomas, a tumor on the brain stem. It’s a nasty one.

“She knows she has a lump and it’s not meant to be there and we are trying to get it out,” says Anita.

Medical advances in the past 40 years have greatly improved survival rates for children diagnosed with most types of cancer. But they’ve done little for children with DIPG. “But she’s a battler, a brave battler,” says Anita.

One day back in March, Maddie was slurring her speech. “I told her to speak properly, I beat myself up about it now,” says Anita. It was a tell-tale symptom but one she is only aware of now.

It wasn’t a throat infection as diagnosed and antihistamines didn’t help. Then after two unusual bouts of sickness sent her home from school, Maddie ended up at the doctors and being referred to hospital for assessment. Life, as they knew it, went topsy-turvy.

“Maddie had a CAT scan on the Saturday which showed shadowing on the brain stem, Monday she had an MRI and Tuesday the whole family was at Starship when we got the news.” DIPG – a highly-aggressive and difficult brain tumor.

Maddie showed she is made of sterner stuff. “Takes it all with a smile,” says Anita. ”She has only cried a couple of times – once when she felt horrible she wasn’t there to reassure her friends when they were crying for her.”

DIPG has created problems on top of the emotional upheaval. This family was tracking along with modest resources tempered by modest needs. Then they were blindsided.

“There’s little disposable income,” says Anita. “If there was, we would have our own house.” She worked at The Warehouse. She had to give that up to care for Maddie.

“She’s partially paralysed on one side, so walking, dressing and bathing can take an hour and a half.”

Husband Paul, a truck driver, is doing the hours to make up. But the new circumstances have imposed new needs.

“Maddie’s bedroom has dry rot, you can poke a finger through it. She also needs a room that is wheelchair-friendly. We need a vehicle that is wheelchair-friendly. The bathroom floor isn’t lined. At the moment we have to lift her into and out of the bath. We’re waiting for a special chair that will enable her to do it herself.”

The family has been in negotiation with a mortgage broker. “Everything else doesn’t matter as long as she has a nice big warm and dry bedroom with wheelchair access and nice clean bathroom and toilet.

“She is an amazing wee person who doesn’t ask for much. She is very self-sufficient, doesn’t like relying on others. But now this is driving me to try to get things for her.”

You can help this family by going to the Givealittle website and searching for Maddi and McKenzie Family.

Out of this hardship, nice things, good things have happened.

The family was staying at Ronald McDonald House in Auckland while Maddie was receiving radiotherapy – the house is a retreat, a home away from home, for families after a day of treatment at Starship.

“A couple of Maddie’s friends, Isabella and Taz, travelled up to be with her for a week during radiotherapy.”

There are the messages from school: “Can’t wait til you get back Maddie, school’s not the same without you.” And “we miss you farting in class Maddie.”

There were also a couple of boys who looked through all the lost property at school to find something with Maddie’s name on it. That gave them an excuse to drop by and see her. “Love that,” says Anita.

There’s an even more serious message here. Anita would like to raise awareness. “Parents should be aware of the symptoms – facial weakness, speech impairment, problems with eye movement, trouble chewing or swallowing, gagging and limb weakness.”

And if you suspect something is wrong, don’t wait. “Go straight to the doctor, push to go straight to the hospital.”

Maddie has been talking to The Weekend Sun a day after her first round of chemotherapy at Starship. “They put an IV line in my arm and it took an hour and a bit.” And she feels different, very different, a good different. Even if she is a bit wobbly.

Next Tuesday Maddie will celebrate her 11th birthday. “I would like another dragon,” she says with characteristic humble expectation. “Of course, another dragon.” She got bitten by the dragon bug five years ago and it hasn’t worn off. “I saw the movie ‘How to train a Dragon’.” And apparently you train a dragon with lots of love and food. It’s worked for Maddie and Ziggy.

The day after her birthday she will be back at Starship for the next round of chemotherapy. The spirit of the dragons will watch over her and keep her safe.

The other night when Anita mentioned to Maddie that life was full of hurdles, Maddie offered up some wisdom of her own.

“That’s simple – why don’t we just remove all the hurdles.” They’re trying to.