Parents raising money to take Elyse Johnson to Mexico for cancer treatment

Jamie, Blake, Casey and Elyse Johnson's lives have been turned upside down by little Elyse's inoperable brain tumour. Photo / Supplied.

Elyse Johnson is in a fight for her life.

The 3-year-old girl should be running around, playing with older brother Blake and having an ordinary childhood.

But since Elyse was diagnosed with an inoperable brain tumour in April last year, the preschooler has slowly lost the ability to walk and talk.

Once a feisty toddler with a sassy attitude and love of dancing, Elyse is now classed a quadriplegic.

The Taupo girl can still move her arms and legs while lying down, and though she can't communicate she's aware and can interact, according to mum Casey Johnson.

That, and the fact she has defied doctors by so far living two months longer than the maximum 12 months expected, is the reason Casey and husband Jamie Johnson want to take Elyse to Mexico for an expensive and unproven treatment.

The Herald understands treatment offered by Clinic 0-19 in Monterrey, Mexico, includes more than 10 types of drugs, plus chemotherapy and immunotherapy.

Elyse has a diffuse intrinsic pontine glioma (DIPG), where an aggressive and difficult to treat tumour has formed on her brain stem.

From the outset Elyse's parents decided against chemotherapy and radiation treatment.

"We didn't think it was going to help. We thought it would make it worse," Casey Johnson said.

Elyse Johnson's parents are trying to raise money to get their cancer-stricken daughter to Mexico for specialised treatment. Photo / Supplied.

Instead they began an intensive fundraising drive to pay for alternative treatments including the medical marijuana spray Sativex.

Johnson, 25, said the mouth spray made with cannabis extract, which Elyse began having six months ago, appeared to have improved Elyse's mobility.

A Givealittle page set up by friends of the Johnsons raised $60,000 which has been used to pay for Elyse's $4000-a-month alternative therapies.

Every day Elyse has the Sativex, TBL-12 or sea cucumber, Vitamin C, probiotics, dandelion, Frankincense oil, and black cumin seed oil. Soon they will add more cannabis oil made by Tilray.

"I think the [Sativex] oil and TBL-12 are helping the most and everything else just helps her immunity."

Because Elyse can no longer swallow she is fed through a gastric tube with Liquid Hope, an organic, whole food formula out of the United States. That alone costs $1000 a month.

Hope for Elyse was beginning to fade until a recent scan showed her tumour had shrunk and become "stable".

"I think she's the best she's been this whole time. She's been laughing and making heaps more noises."

They investigated using Australian surgeon Charlie Teo, known for removing brain tumours other doctors do not attempt, but the family were put off the $400,000 operation by Teo himself.

"He said if he operated she wouldn't wake up."

Instead they began researching other treatments and heard about one in Mexico, which has not been peer-reviewed or published among the medical profession.

Johnson said she had spoken to several parents of children with the same brain tumour currently at the clinic and they were so far pleased with the results.

She said it appeared the children's tumours were shrinking but admitted it was "early days".

Johnson said the treatment cost about $12,000 but of all the treatments she had researched "this is the cheapest and it seems to be having the best results".

She said the couple will do everything in their power to keep their youngest child alive, even if it meant taking her to Mexico for an unproven treatment.

"What we really want to do is keep her going until a cure comes along. We just need time."

They are hoping to raise at least $50,000.

National clinical leader of child cancer in New Zealand, Dr Scott Macfarlane said DIPG was a "horrible tumour" with no satisfactory conventional therapy available.

Macfarlane said if there was published treatment with good evidence-based proof of success, "everyone around the world would be wanting to use it".

"In the absence of that there are a number of experimental treatments, none of which have been published or have had terribly much in the way of long-term durable results in enough patients to say this is the breakthrough we have been waiting for."

He said desperate parents would do anything.

"They will look for reports, they'll look for stories from other parents whose child seems to have had a miracle cure against all the odds... and they'll go for it, so they're a very vulnerable group."

Macfarlane said doctors did not want to discourage hope but it was important families knew the risks before they went.

"If they've done their research, if they understand the risks involved and the low chance of a benefit then they may make a decision that this is what they have to do."

To donate go to Elyse's Givealittle page here or search Supporting Elyse.