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Medical marijuana spray: A gift of hope for Taupo girl's second birthday

November 28, 2016

Mum Casey Johnson is hopeful for a cure for Elyse's inoperable brain tumour. She's pictured here with niece Maia.

Medical marijuana is giving a Taupo two-year-old a new lease on life, but it comes with a hefty cost.

At just three years old Elyse Johnson has become the youngest girl to be given Ministry of Health approval for Sativex to treat her tumours.

It's an oral spray containing cannabis extracts in a metered dose.

Elyse has an aggressive strain of brain tumour, the size of a golf ball, called diffuse intrinsic pontine gliomas.

It causes her nausea, dizziness and seizures and the tumour is too large to be operated on.

Over the course of the year Elyse has lost the ability to walk, talk and can have trouble eating.

In purple butterfly facepaint, Elyse Johnson celebrated her third birthday last week.

It was an extra special celebration her family her thought she might not live to see the day.

Now they are hoping Sativex will allow Elyse to see her third birthday. ​

"We thought we had months," Elyse's mother Casey Johnson said.

"Most don't last six months and we've had seven."

While her family was preparing for the worst, their friends became amateur medical researchers in the hope of finding some treatment for Elyse.

Their research led them to discover Sativex. The drug has been used to treat spasticity in sufferers from Multiple Sclerosis but is not a funded drug in New Zealand.

"We were not sure if we could get it approved," Johnson said.

"No other children with tumours has received it.

"We told we wouldn't get approval as even adults were getting turned away from it, but we were lucky and received it straight away. It was actually quite easy."

Elyse took her first dose of medicine on Friday and tolerated it well.

"It has given us hope," she said.

"Now were are not just making her comfortable. We've read about other cases where it has improved the quality of life for others sufferers of DIPG.

"One little girl is doing ballet and swimming again. There is hope for the future."

The hope is that Elyse's tumour remains the same size or even starts to shrink.

"If it will shrink we might have some more options. Surgeons won't operate because of its size."

However, hope comes with a hefty price tag that Elyse's family will have to bear.

Sativex costs more than $50 per millilitre with Elyse's first prescription setting her family back $1650.

The community has rallied behind the family and donated more than $40,000 via her Givealittle page, but that's almost already been spent on her treatment so far.

"It costs us about $650 a week to care for her," Casey said.

"She used to be on TBL12, a natural medicine made from sea cucmber extract. That also worked well but was expensive to buy.

"We are hoping people can dig a little deeper. When you think about it that is one person's wages a week."

Johnson is no longer working and has become a full-time carer for Elyse. Without her additional income she worries things might become tough for her family.

Many families using the drug have taken their frustration to the internet to help fund the treatment which they say is priced out of reach of New Zealanders.

Johnson is calling on the Ministry of Health to fully fund the drug and conduct more research into alternate treatments for children.

"When we came back from the hospital [after her initial diagnosis] we had nothing at all. No thoughts on other treatments.

"All of this has been made possible because my friends have become mini medical researchers."

People wanting to donate to Elyse's treatment can visit givealittle.co.nz/cause/littlelyse.
 

http://www.stuff.co.nz/sunday-star-times/latest-edition/latest-news/86943244/Medical-marijuana-spray-A-gift-of-hope-for-Taupo-girls-second-birthday

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