Skyla needs top-up for wish list

Skyla Keating, who will be 6 in September, is surviving against the odds. Photo / Jason Oxenham

Skyla Keating wants to see the snow.

The 5-year-old is not like most children. She doesn't have the rest of her life to do all the things a little girl dreams of.

In August last year Skyla was diagnosed with a rare and inoperable brain tumour and given just nine months to live.

The courageous Bay of Plenty girl has exceeded doctor's expectations, living 10 months already, but her family want to make her wishes come true sooner than later. They include visiting the snow, flying in a helicopter and going on a horse trek.

Her grandfather, "Poppa" Keith Hatwell, said fundraising for Skyla's bucket list was urgent while she was well enough to cope with the adventures.

Skyla's cancer was discovered after her father, Jamie Hatwell, became concerned when she began "stumbling around" following a school visit. Doctors initially diagnosed her with an ear infection, but a follow-up visit to Tauranga Hospital revealed the brain tumour. After being admitted to Starship hospital for more tests, she was diagnosed with Diffuse Intrinsic Pontine Glioma. DIPG is relatively rare in New Zealand, with only one or two children diagnosed annually, and is terminal. It was then Skyla's family set up a Givealittle page and $13,000 was raised to help cover the cost of alternative methods when medical treatment was limited to radiation. But the funds have depleted to $1060 as Skyla received a range of alternative therapies costing at least $1000 a month.

Mr Hatwell said he and Skyla's father believed the alternative treatments had prolonged Skyla's life and the family felt by using the therapies they were doing everything possible to help the little battler.

Skyla will be 6 in September. Mr Hatwell said the family were preparing for the worst but holding out hope for as long as possible with their precious girl.

"The prognosis for DIPG is basically zero per cent survival. The mean is nine months. Some kids around the world have been passing away at 15, 17 months and one little girl lived for two years. Others only last six weeks from diagnosis."

Ms Keating said she was realistic about the likely outcome for her daughter, but she still had hopes.

"I hope she has an amazing life, that she isn't scared, that she knows she is loved and she has a peaceful death. What more could I hope for?"

Rare disorder

• Diffuse Intrinsic Pontine Glioma (DIPG) is a tumour found in part of the brain stem near the top of the spinal cord.

• Located in the part of the brain that controls a number of important bodily functions such as breathing, sleeping, bladder control and balance.

• It is a diffuse tumour meaning it's not isolated and the cancer cells mix with healthy cells.

• Primarily affects children, with most diagnoses occurring between 5 and 12 years of age.

• Diagnosed in one to two children each year in New Zealand.

• To donate to help Skyla visit https://givealittle.co.nz/cause/teamskylahatwell