Party will be special for Skyla

Angie Keating and Jamie Hatwell say their daughter Skyla has changed a lot since she was diagnosed with a rare brain tumour three weeks ago. Photo / NZME.

At first glance Skyla Keating appears to be your average Kiwi kid.

With head of golden locks, dressed in purple pyjamas with Disney's princess Elsa on the front, she is snuggling up to a rather threadbare Elmo in her mother's lap.

But in her room at Auckland's Ronald McDonald house are the first clues that life is not as cosy as it looks. The wheelchair tucked in by the bedroom door and the Beads of Courage, one for each medical procedure, hanging off the TV cabinet door are the first signs of Skyla's illness.

The Tauranga girl, who turns 5 on Tuesday, has been diagnosed with a rare and inoperable brain tumour - diffuse intrinsic pontine glioma (DIPG) - located in the part of the brain responsible for important bodily functions such as breathing, sleeping, bladder control and balance.

Mother Angie Keating said that in the three weeks since her once active, independent 4-year-old was diagnosed, she had lost her ability to do anything without help.

Skyla had been excited to start school this year. Instead she faces 45 days of radiotherapy treatment at Starship Hospital.

In an effort at normality, the family and the wider community have rallied together to organise a party for Skyla's birthday on September 6.

Offers of entertainment, decorations and food have flooded in since a relative, Alicea McKenzie, put up a post on her local Facebook page.

Skyla's father Jamie Hatwell said his daughter had changed a lot in the past three weeks.

"The hard thing is she used to be able to wake up at 6am and run around till 6pm, and now in the morning, a couple of hours after radiation, she starts getting tired again." He had first picked up something was wrong with his daughter when she came home from a school visit and was "stumbling around".

Even the doctors were not alarmed at first, initially diagnosing an ear infection.

Dr Michael Sullivan, a lead consultant in solid tumour and neuro-oncology team at the Royal Children's Hospital in Melbourne, said the incidence of DIPG was relatively rare in New Zealand, with only one to two children diagnosed annually.

"Radiotherapy is the best available treatment, chemotherapy was unlikely to work on the tumour and surgery was not an option either."

Ms Keating was aware radiotherapy was not a cure, but said it would at least give them a "honeymoon period" where Skyla could be a "normal kid" for a while.

In her online blog, Ms Keating described how hard it was seeing the effect the tumour had on her daughter.

"It will take all of the things she loves, it has already begun to take her walking, her speech, she can't move her left hand. Soon it will rob her of her ability to move, speak, hear, see, eat, drink and eventually breathe."

About Diffuse Intrinsic Pontine Glioma
•A tumour found in part of the brain stem near the top of the spinal cord.
•It's located in the part of the brain that controls bodily functions, like breathing, sleeping, bladder control and balance.
•It's a diffuse tumour, meaning it's not isolated and the cancer cells mix with the healthy cells.
•It primarily affects children.
•It's diagnosed in one to two children each year in New Zealand.
•How to help: givealittle.co.nz/cause/teamskyla - any surplus will be donated to child cancer research.