Helping hands to aid Elyse's fight for life

Casey Johnson and daughter Elyse (centre) pictured with friend and fundraiser Victoria Beacock (right) and charity concert organiser Carol Murch. Photo/Dee Wilson

Family members, friends and complete strangers are rallying to support a Kuratau couple's battle to continue funding what they believe are life-saving treatments for their 3-year-old daughter Elyse Johnson.

A Taupo musician who read a Facebook post about Elyse is the latest to join fundraising efforts - organising a charity concert in Taupo later this month.

In April last year, the toddler was given between two to nine months to live after being diagnosed with an inoperable aggressive brain stem tumour. Her parents refused to give in without a fight and gained Ministerial permission in November to treat her with a medical cannabis spray. A Givealittle page that was set up by supporters helped raise enough money to cover the cost of the Sativex spray (around $1000 a month) and a range of other alternative treatments.

A scan in mid-January showed the tumour had stabilised. There was further good news last month after another scan showed the tumour remained stable with some reduction in its width.

Fundraising efforts to ensure that the family can continue covering the cost of the cannabis spray and other alternative treatments have now moved up a gear.

Family friend Victoria Beacock, who has been spearheading the Givealittle fundraising, says donations are being boosted with a couple of new fundraising initiatives. One of the fundraisers - oneyellowpaperclip.weebly.com - has already seen a yellow paper clip traded for an amethyst crystal case.

"The case belonged to a lady in Auckland who saw the post about Elyse and wanted to get the ball rolling," says Victoria.

The amethyst has since been traded for a $150 Black Diamond gift certificate donated to the cause by Taupo's Black Diamond Tattoo and Piercing Studio. The studio has already raised just over $1000 for Elyse and produced a video to help the Johnsons publicise her story.

Taupo musician Carol Murch is also organising a charity concert to raise funds for the toddler after seeing the story on Facebook and messaging Victoria to offer her help.

"I saw the Facebook posts, burst into tears and wanted to do something to help.

"It just blew me away."

Carol, whose parents, partner and extended family members are all musicians, contacted Turangi band member and Tuwharetoa FM breakfast host Aaron Moeke, who came on board to give her a helping hand.

"I've never done anything like this and didn't know where to start."

She says around 25 local artists and bands are taking part in the concert - Songs for Elyse - which is being held at Spa Hotel on April 29.

"We have friends, businesses and complete strangers all coming together to make it happen, including someone in Reporoa who is making T-shirts.

She says local businesses have been really supportive sponsoring prizes for raffles and spot prizes.

"It is amazing - it's just snowballing."

Victoria Beacock says the support has been overwhelming for Elyse's parents - leaving them to concentrate on her care and look after her brother Blake, 5.

"I've seen the improvement in Elyse and feel it's a cause worth fighting for," says Victoria. "As well as helping Elyse, everything we have discovered along the way could benefit other children with the same condition."

Elyse and her mother Casey Johnson are at Starship Hospital this week where Elyse is having a nasal feeding tube replaced with a permanent gastric feeding tube, which Casey says will be a lot more comfortable for the toddler and make feeding much easier.

Anyone wishing to help can donate online at givealittle.co.nz/cause/littlelyse, or message the Supporting Elyse Facebook page about the fundraising campaigns and this month's charity concert.

The concert runs from 1pm to 6pm on April 29, at Spa Hotel. Entry is $10 for adults and $5 for children.