Generous Kiwis have given over $21,000 to help little Elyse Johnson get the treatment that could save her life, but there's still a long way to go before her family has the $400,000 necessary for a desperately needed operation.

The 2-year-old has been diagnosed with a devastating brain tumour disease called diffuse intrinsic pontine glioma (DIPG) which strikes at the heart of childhood and for which there is no certain cure.

Most children diagnosed with DIPG have less than one year to live and Elyse is already three months into her nine-month prognosis. There is, however, a glimmer of hope.

Close family friend Victoria Beacock said they were awaiting contact from internationally renowned neurosurgeon Professor Charlie Teo, who may be able to help.


"DIPG tumours are a no-go for all surgeons and he has gone where no surgeon has gone before and removed tumours and saved children's lives."

Elyse Johnson, 2 , with her mother Casey Johnson, her father Jamie Johnson and big brother Blake. Photo / Supplied
Elyse Johnson, 2 , with her mother Casey Johnson, her father Jamie Johnson and big brother Blake. Photo / Supplied

Teo primarily works at the Prince of Wales Private Hospital in Sydney and has extended the lives of many children and adults with brain tumours.

The Taupo family need to raise close to $400,000 to get Elyse to Australia and to undergo the surgery.

"That sum may sound large or even unattainable but not when we have a large group of caring, loving Kiwis (and anyone else reading this) rallying around little Elyse and her family," Beacock said.

"Together [if] we can get 20,000 caring people like yourself to give just $20, we will be able to get the treatment needed and save Elyse. There are over 4.5 million people living in New Zealand so getting 20,000 donations is less than 1 per cent of the population."

Elyse is also taking a natural medicine called TBL-12, which is not government-funded and very expensive. A month's supply costs $1124.17.

Beacock pleaded with New Zealanders to do three simple things:

• Make a donation through the Givealittle page

• Share the Supporting Elyse Facebook page and tag three friends

• Comment on the page so the family can thank donors personally

All donations go to Elyse's parents to assist with purchasing TBL-12, medical care, travel and general costs around making the most of their precious time together.