Keeping your child alive should not send you bankrupt.

But that's the heartbreaking dilemma Taupō parents Casey and Jamie Johnson face every month when they have to somehow find the $4000 for the medications they believe are keeping their daughter Elyse, 4, well and even helping shrink the tumour that has been pressing on her brain stem for more than two years.

Elyse was initially given between three and nine months to live after being diagnosed with an aggressive brain tumour known as DIPG (diffuse intrinsic pontine glioma) in April 2016. She was going downhill rapidly and her family celebrated her third birthday early, fearing she would not make it to the date.

However Elyse then began a rapid improvement and since then has defied doctors' expectations. It's been 27 months since her diagnosis.

Advertisement

Although she cannot walk or talk Elyse has also regained some movement and can hold up her head, stand in a standing frame and is making attempts to feed herself. She is attending kindergarten and enjoys music and playing. What's more, the inoperable tumour pressing on her brain stem has stopped growing and has even shrunk a little.

The Johnsons have put it down to the alternative therapies they use to treat Elyse, instead of chemotherapy and radiation that doctors recommended.

Every day Elyse has cannabis oil, TBL-12 or sea cucumber, Vitamin C, turmeric and oils.

But the therapies are hugely expensive. The family has raised $90,000 but the money is almost all gone and there is still no cure in sight. The monthly costs of Elyse's medicine are crippling but there is no alternative.

The family has been buoyed by the support of the community, well-wishers and donors and Casey's friend Victoria Beacock, who has driven the fundraising, says she will keep fighting.

"No parent of a child suffering any life threatening illness should have to pay tens of thousands of dollars just to keep their child alive," says Victoria. "My goal here is to raise enough money to cover the costs of Elyse's medicine until a cure is found."

Casey Johnson says while DIPG is reasonably rare, all but one of the other children diagnosed around the same time as Elyse, whether treated conventionally with radiation or not, have died. The Johnsons hope to be able to continue to raise enough money to keep Elyse alive and stable until a cure for DIPG can be found. The financial strain is immense and Casey admits she worries constantly.

"As soon as money's coming, it's going and we've got about $1200 left ... I can't stop now when it's working.

So far Victoria and others have organised a variety of fundraisers and are continuing to search for ideas to keep the money coming.

The latest is a concert headlined by dubstep artist Tiki Taane at Taupō's Great Lake Centre hall on July 28 with a range of local musicians in support. Tickets are for sale at Ticketek.

The Supporting Elyse Givealittle page is still live and accepting donations and there is a Facebook page, Supporting Elyse, with regular updates on her progress and account details for donations.