Taupō parents Jamie and Casey Johnson with their children, Blake and Elyse, pictured in January 2024. Photo / Supplied
Nearly 10 years ago, Taupō parents Casey and Jamie Johnson were told their daughter Elyse had “a few weeks to a couple of months, max” left to live. After surviving a cancerous brain tumour, Casey now hopes her 12-year-old daughter can learn how to walk.
For Casey Johnson, the “worst part” of her daughter outliving a terminal cancer prognosis is wondering if and when it will return.
Elyse Johnson was diagnosed with Diffuse Intrinsic Pontine Glioma - a cancerous brain tumour - in April 2016 at age 2.
The tumour has left Elyse physically disabled, using a wheelchair, and with “very high needs”, including help with feeding and changing.
Her cognitive thinking, however, has not been impacted.
“She understands everything - it’s just the tumour obviously stops it getting out because it’s stopped her speech,” Casey Johnson said.
In 2016, Johnson said Elyse’s symptoms included walking off balance and not keeping up with milestones, such as speech progression.
An MRI scan at Rotorua Hospital revealed she had a brain tumour.
The family was flown to Starship Children’s Hospital, where Elyse was given a terminal prognosis of “a few weeks to a couple of months”.
Johnson said there was no cure or treatment - only palliative radiation.
The family declined radiation: “We didn’t want to sit in hospital for her last couple of months”.
Elyse survived, despite the tumour initially continuing to grow.
In 2017, Elyse became “locked in her body when the tumour was at its biggest size”.
She lost all mobility and could not eat, drink, or talk.
Since then, Elyse had regained movement of her limbs and fine motor skills, and could eat, drink, and say “a few words”.
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.
Every scan since 2017 had shown the tumour had shrunk, and Elyse was no longer classified as palliative, Johnson said.
Her survival had defied doctors’ expectations.
“It’s kind of hard to comprehend.”
Johnson sympathised with families who had lost children to similar diseases.
“It’s also an amazing feeling ... that she’s come this far and that all this hard work has gotten her here, because it hasn’t been easy.”
Johnson, who is Elyse’s fulltime carer, said caring for her had been “non-stop”.
“The 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.”
She and Jamie run a dairy farm and also have a 15-year-old son, Blake.
Johnson said Elyse had regular scans and appointments to monitor the tumour, as “it can change at any time”.
“There’s still always that thought in the back of your head, ‘Is it going to come back and when’s it going to come back?’
“That’s the worst part.”
Johnson said Elyse has physiotherapy and occupational therapy, and planned for her to start rehabilitation at Rotorua’s Centre of Movement.
Centre of Movement is an Australian paediatric allied health clinic that opened its first permanent New Zealand location in Rotorua in July 2025.
Johnson said she heard of the Trexo Robotic Walker from a family going to Australia’s Centre of Movement.
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.
Johnson said a Trexo costs $US70,000 ($117,000). The Rotorua Daily Post has previously reported that a one-week intensive programme at Rotorua’s Centre of Movement costs $3200.
“Elyse is determined and independent, and I want to make her life as easy as possible when she’s an adult. She loves to do everything for herself.
“We appreciate any help we can get because it’s going to better her future.”
Donations can be made on the family’s Givealittle page.
Johnson thanked the community for its generosity over the past 10 years, including help with medical costs, travel, equipment, and care for Elyse.
Centre of Movement director Stephen Pennisi said the Trexo was a robotic walking device that helped children with neurological and physical disabilities experience supported walking.
Therapists used the Trexo to guide “safe, repeated stepping with proper leg alignment and posture, something that is difficult to achieve through hands-on therapy alone”.
The high level of repetition supported neuroplasticity, helping the brain and body build more effective movement patterns, Pennisi said.
“We commonly see improvements in strength, endurance, posture, and overall movement.”
Being upright and moving at eye level with others could also boost a child’s confidence, motivation, and participation in daily tasks, he said.
“The Trexo is helping expand what is possible for the children and families we support.”
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.