\u201cShe understands everything – it\u2019s just the tumour obviously stops it getting out because it\u2019s stopped her speech,\u201d Casey Johnson said.<\/p>\n
In 2016, Johnson said Elyse\u2019s symptoms included walking off balance and not keeping up with milestones, such as speech progression.<\/p>\n
An MRI scan at Rotorua Hospital revealed she had a brain tumour.<\/p>\n
The family was flown to Starship Children\u2019s Hospital, where Elyse was given a terminal prognosis of \u201ca few weeks to a couple of months\u201d.<\/p>\n
Johnson said there was no cure or treatment – only palliative radiation.<\/p>\n
The family declined radiation: \u201cWe didn\u2019t want to sit in hospital for her last couple of months\u201d.<\/p>\n
Elyse survived, despite the tumour initially continuing to grow.<\/p>\n
In 2017, Elyse became \u201clocked in her body when the tumour was at its biggest size\u201d.<\/p>\n
She lost all mobility and could not eat, drink, or talk.<\/p>\n
Elyse Johnson pictured on her third birthday. Photo \/ Supplied<\/p>\n
Since then, Elyse had regained movement of her limbs and fine motor skills, and could eat, drink, and say \u201ca few words\u201d.<\/p>\n
Johnson said Elyse had used several natural treatments, including prescribed cannabis, black pepper essential oil, zinc drops, vitamin C and D, probiotics, vital supplements, and TBL 12 sea cucumber extract to boost her immune system.<\/p>\n
Every scan since 2017 had shown the tumour had shrunk, and Elyse was no longer classified as palliative, Johnson said.<\/p>\n
Her survival had defied doctors\u2019 expectations.<\/p>\n
\u201cIt\u2019s kind of hard to comprehend.\u201d<\/p>\n
Johnson sympathised with families who had lost children to similar diseases.<\/p>\n
Elyse Johnson was diagnosed with Diffuse Intrinsic Pontine Glioma – a cancerous brain tumour – in April 2016. She is wearing 609 ‘cancer beads’ which symbolise her cancer journey. Each bead represents something specific with treatment, such as surgery, scans, and nights in the hospital. Photo \/ Supplied<\/p>\n
\u201cIt\u2019s also an amazing feeling … that she\u2019s come this far and that all this hard work has gotten her here, because it hasn\u2019t been easy.\u201d<\/p>\n
Johnson, who is Elyse\u2019s fulltime carer, said caring for her had been \u201cnon-stop\u201d. <\/p>\n
\u201cThe first four years she was pretty much in and out of hospital … and then like appointments, keeping up with school … trying to have fun too in between stuff.\u201d <\/p>\n
She and Jamie run a dairy farm and also have a 15-year-old son, Blake.<\/p>\n
Johnson said Elyse had regular scans and appointments to monitor the tumour, as \u201cit can change at any time\u201d.<\/p>\n
\u201cThere\u2019s still always that thought in the back of your head, \u2018Is it going to come back and when\u2019s it going to come back?\u2019<\/p>\n
\u201cThat\u2019s the worst part.\u201d<\/p>\n
Elyse Johnson’s brain tumour has been shrinking since 2017. Photo \/ Supplied<\/p>\n
Johnson said Elyse has physiotherapy and occupational therapy, and planned for her to start rehabilitation at Rotorua\u2019s Centre of Movement.<\/p>\n
Centre of Movement is an Australian paediatric allied health clinic that opened its first permanent New Zealand location<\/a> in Rotorua in July 2025.<\/p>\n Johnson said she heard of the Trexo Robotic Walker from a family going to Australia\u2019s Centre of Movement.<\/p>\n In the hope of seeing Elyse walk independently, the family was raising money to buy a Trexo or to fund rehabilitation at the Centre of Movement, where a Trexo is located.<\/p>\n Johnson said a Trexo costs $US70,000 ($117,000). The Rotorua Daily Post has previously reported that a one-week intensive programme at Rotorua\u2019s Centre of Movement costs $3200.<\/a><\/p>\n \u201cElyse is determined and independent, and I want to make her life as easy as possible when she\u2019s an adult. She loves to do everything for herself.<\/p>\n \u201cWe appreciate any help we can get because it\u2019s going to better her future.\u201d<\/p>\n