A Taupo toddler with an incurable brain stem tumour is beginning to show signs of increased mobility four weeks after starting to use a medical marijuana spray.

Elyse Johnson has been diagnosed with a diffuse intrinsic pontine glioma (DIPG), and the 3-year-old was earlier this year approved for Sativex, a mouth spray made with cannabis extract.

Mother Casey Johnson said she believed Elyse was the youngest person in New Zealand to be approved for the drug, which is normally used to treat symptoms of multiple sclerosis.

"She's getting her mobility back and that, slowly," Johnson said.


Elyse cannot walk and had been unable to bend her legs. But four weeks on from starting the Sativex treatment, Elyse can start to bend her legs.

Johnson said she began to notice changes for Elyse "pretty much straight away" after starting on the Sativex. She is happy to see the medicine is helping in some way, and hopes it can shrink the tumour.

However, the family have an expensive road ahead of them; the Sativex costs $1600 a month, which is being paid for by donations.

The family is fundraising to be able to take Elyse to Australia for a potentially life-saving surgery. It will cost them $400,000.

The money will allow them to set up an operation performed by internationally renowned neurosurgeon, Charlie Teo, who has been able to extend the lives of many adults and children with brain tumours.

A Give a Little page for Elyse so far has $46,000 in donations.

Elyse was diagnosed nine months ago and given only nine months to live. Most people found with this type of tumour have less than a year to live but Elyse is still alive.