Maddi McKenzie is lying in her bed.

Metallic gold and silver temporary tattoos have been carefully placed across her smooth, bald head.

"My little Avatar," Maddi's mum, Anita Barnett says, quietly running her fingers down her daughter's cheek. "She loved Avatar."

A light blue stone with a silver dragon coiled around it lays against her neck and her left hand is curled around her beloved cellphone. Her nails are painted a deep purple.


A green, squeaky dragon which Maddi used to call her mum is in her right hand.

The 11-year-old is surrounded by her favourite things. Giant dragons and teddy bear soft toys are stacked at the end of the bed and a photo of Maddi dressed as a police officer is resting against a small police dog soft toy.

More dragons of all sizes, shapes and colours like blue, green, purple and black are placed around Maddi's bedroom and her pet bearded dragon, Ziggy Stardust, is asleep in his terrarium in the corner.

Maddi looks relaxed and at peace.

Anita says her little girl has finally got what she has wanted for the past 15 months.

She's now cancer-free.

"We're just going for another coffee, Mads," Anita says, giving Maddi's hand a little squeeze as we leave the bedroom.

Maddi has over 200 beads of courage. PHOTO/ AMY DIAMOND
Maddi has over 200 beads of courage. PHOTO/ AMY DIAMOND

Maddi's beads of courage are neatly placed on the dining room table when I sit down.


There are more than 200 of them, all different colours and shapes. Each represents a different obstacle Maddi overcame in her fight against diffuse intrinsic pontine glioma, which is a tumour on the brain stem.

The white beads are for every time she received chemotherapy, the radiation beads are spotted and glow in the dark.

There are two silver anchor beads which Anita tells me is for staying grounded throughout treatment.

On Wednesday this week, the final bead was added to Maddi's bead collection, a red butterfly to signify her passing.

"She's grown her wings and flown away," Anita tells me, holding a stack of cards that explain what each bead is about.

The family's home in Papamoa is full of people, just the way Maddi liked it.

Many of Maddi's family and friends have been visiting over the past 24 hours. More than 10 people are at the house while I'm there including Anita's brother who is over from Perth, Maddi's grandmother, aunties, multiple cousins and close friends.

A table covered in cards, photos and a variety of flowers including white lilies and red roses sit in the lounge. Clusters of pink, blue and yellow balloons are in every corner.

"Maddi always loved having people around her," Anita says.

The funeral arrangements are under way which will be a celebration of Maddi's life and those who knew and loved her.

Maddi's favourite toy dragons will lay with her instead of flowers and a McDonald's quarter pounder burger will sit on the casket. Maddi loved McDonald's.

"If Maddi knew someone was coming over to visit her she would text to ask them to bring her McDonald's," Anita says. "They would turn up with food for her without me knowing," she laughs.

On Monday, Anita will be driving the hearse with her 15-year-old daughter Lillee sitting next to her.

Maddi will drive past Papamoa College, where she would have gone to school, past her old kindergarten and will finally do a lap around the field at Papamoa Primary School, the last school she went to.

The funeral will be held at Legacy Gardens in Papamoa and will be "all about the kids", Anita says.

Helium balloons will be let off at the school field. Her closest friends will be the pallbearers.

Lillee, Anita and Maddi enjoy a beach day out together. Photo/ Supplied
Lillee, Anita and Maddi enjoy a beach day out together. Photo/ Supplied

Maddison Janet McKenzie was born on October 17, 2006, at Tauranga Hospital.

The births of her daughters were the best two days of Anita's life.

At just over six pounds, Maddi seemed tiny compared with her four-year-old big sister.

"She was so small I didn't want to let her go. I just wanted to put her back in my tummy."

Growing up Maddi was a happy and kind little girl. She loved going to school and would do anything to make her friends happy.

She was a bit of a tomboy and loved motorbikes, cars and was always playing outside.

Maddi's favourite things were her family, friends, nature and animals, so much so that her family has asked anyone who wanted to send flowers or a gift, to instead donate to the World Wildlife Fund.

"Maddi loved that the organisation saves the strangest animals."

Maddi was full of life.

"Rain, hail or snow all she wanted to do was ride her bike.''

But then Maddi got sick.

Maddi loved nature. PHOTO/ SUPPLIED
Maddi loved nature. PHOTO/ SUPPLIED

It was March 2017 when Maddi's symptoms started to show.

She had begun losing her balance, slurring her speech and Anita noticed a lag in her eye.

Maddi went through a number of tests at Tauranga Hospital.

Two days later the family received the devastating news: Maddi had a rare brain stem tumour.

She was given six to nine months to live. But brave Maddi fought for 15 months.

"DIPG takes everything away from a child," Anita says.

I first met Maddi in December last year when she was surprised with an early Christmas party.

Her Christmas wish was to have a ride on a motorcycle but instead of one, 80 turned up at her house along with a handful of hot rods and classic cars.

She had hours of fun with her closest friends and family members.

The last time I visited Maddi I realised that YouTube was a big part of her life. She created her own videos and ran her own YouTube channel.

It was in March this year when she showed me all the videos she had made and the hundreds of comments from people all over the world saying how inspiring she was.

At the time, Anita said seeing more subscribers to her channel really gave Maddi the whole world in her little room.

Back then, Maddi had lost mobility in much of her body and her speech. YouTube was a way for Maddi to express herself.

Throughout Maddi's fight, Anita says it was important for her daughter to be able to make her own choices.

One of those choices was to give something to help other children fighting the same cancer. After she died on Wednesday, Maddi's tumour was removed and the tissue has been donated to research so more can be understood about the disease.

"She really has won the battle.

"Maddi taught everyone around her what respect, dignity and love truly means," Anita says.

"As a parent, I feel honoured to have had the opportunity to make Maddi's journey beautiful."

Anita feels Maddi gave her and Lillee a blessing with the way that journey ended.

Maddi's favourite things were her family, friends, nature and animals. Photo/Supplied.
Maddi's favourite things were her family, friends, nature and animals. Photo/Supplied.

On Wednesday night, Maddi was taken to Tauranga Hospital after struggling to breathe.

But Anita came to the conclusion her daughter had decided it was her time to go, so the family came home.

Maddi was changed into her own clothes and she curled up with her mum and sister.

Over the last few weeks of Maddi's life, the family had watched the trailer to the new How To Train Your Dragon film which was due out next year. It was no secret Maddi loved dragons and she knew every word to the trailer.

The dragon in the upcoming film is a beautiful, sparkling, rare white dragon.

Anita held on to Maddi's hand and told her to imagine she was the first person to ride the dragon, flying through the sky.

"Feel the clouds in your hands and let go. Mum is going to be ok."

A celebration of Maddi
-Maddi's funeral will be held at Legacy Gardens in Papamoa on Monday at 1pm

What is a diffuse intrinsic pontine glioma?

Diffuse intrinsic pontine gliomas (DIPGs) are highly aggressive and difficult-to-treat brain tumours found at the base of the brain. They arise from the brain's glial tissue — tissue made up of cells that help support and protect the brain's neurons. These tumours are found in an area of the brainstem called the pons, which controls many of the body's most vital functions such as breathing, blood pressure, and heart rate.