Jesse’s last hope: whānau turns to Australia after NZ cancels life-changing surgery twice
UPDATED: 9 JULY 2026 11:15 AM
UPDATED — 9 JULY 2026 11:15 AM
Following the story originally brought to you by Taiuru News, there is a promising new chapter in the journey of Taranaki rangatahi, Jesse Hereora.
Jesse is now preparing for a life-altering medical procedure, and the momentum has shifted significantly. Driven by the critical need for specialised care overseas, his whānau and neighbours have been working tirelessly to bridge the financial gap, and their collective efforts are finally yielding positive results. As the community rallies behind this young man, a path toward his life-changing surgery is becoming clearer than ever.
“Our dream is simple – we just want Jesse to be able to eat again without needing strong painkillers. I honestly can’t wait for the day he eats me out of house and home,” Jesse’s mother Jacqueline Chapman said.
“One thing I didn’t allow for when I worked out the costs was the exchange rate. Unfortunately, it’s left us a bit shorter than we’d planned, which has definitely added some extra pressure,” Jacqueline said.
“The surgery Jesse needs is a major operation. The surgeon will be operating on his aorta, and part of it will need to be repaired using a bovine patch (cow tissue), so we’ve been joking that he’ll come home with a little bit of Aussie in him,” she said.
The journey recently took Jesse and his whānau to Canberra, Australia, for a vital consultation with Professor Dr Gert Frahm-Jensen.
The results were positive, and a date has officially been set for the procedure: 28 August. However, the nature of the surgery is daunting for any family to face.
Since returning from the initial consultation, the family has been in a whirlwind of activity. From sausage sizzles and home baking sales to raffles, the effort to fund the surgery has become a true community affair.
A major highlight is the upcoming Jingo Night on 25 July at the TET Stadium in Stratford. These efforts are not just about reaching a target; they are about overcoming unexpected hurdles.
Beyond the surgery, the family looks toward a future where Jesse can reclaim his passions. He is eager to get back to fishing, gaining work experience, and eventually securing full-time employment.
For now, the focus remains on the recovery period in Canberra, where they will stay for three weeks post-operation for close monitoring before being allowed to fly back to New Zealand.
As the community continues to show up at the Crazy Pumpkin Market and local events, the gratitude from Jesse’s family is immense. “Finally, from the bottom of our hearts, thank you to every single person who has donated, shared our story, bought a raffle ticket, attended a fundraiser, volunteered their time, or simply checked in on us. Whether your support has been big or small, every act of kindness has helped us get one step closer to giving Jesse the chance he deserves.”
To support Jesse’s Journey, you can follow their progress on Facebook or contribute through their Givealittle page.
UPDATED — 30 MARCH 2026 3:20 PM
Health New Zealand has confirmed that patients who wish to pursue surgical treatment overseas for conditions like Median Arcuate Ligament Syndrome (MALS) must fund it themselves if local specialists determine surgery is not the “best option”.
This policy is part of Health NZ’s stance that there is no single successful treatment, and no treatment or surgery can remove the underlying problem associated with MALS.
The caution against surgery stems from the fact that it is “not always considered the best option” because the level of complexity and uncertainty of MALS varies from case to case.
National Chief Medical Officer Dame Helen Stokes-Lampard addressed the complexities of MALS, which can be a complication of rare conditions like Ehlers-Danlos Syndrome (EDS) or result from weight loss. Dame Helen stressed that a “very careful assessment” is required for diagnosis and treatment in New Zealand, citing the low quality of available evidence with “no published randomised controlled trials”.
To manage these complicated cases, Health NZ has established a national vascular multidisciplinary meeting to review patients and ensure they receive the most appropriate care, determining whether a case requires surgery or is best managed without it, based on the individual’s circumstances.
Health NZ affirmed its confidence that staff have followed “best practice” when determining a patient’s care pathway, including referral to the national vascular multidisciplinary/MALS review team for diagnosis and management recommendations. Patients are currently managed in a multidisciplinary manner, involving primary care, allied health, and specialists, with treatment options including pain management, physiotherapy, and splinting. Dame Helen noted that many patients respond well to treatment without needing further interventions.
For most teenagers, life revolves around sports, friends, family and the freedom to be outside. But 17-year-old, Jesse James Hereora, every day is shaped by pain.
For the past three years this rangatahi from Taranaki has been living with severe abdominal pain that strikes every time he eats, a condition that has caused significant weight loss and steadily deteriorating health.
His mother Jacqueline Hereora, says the change in her one energetic son has been heartbreaking to witness. Before his illness took hold, Jesse’s days looked very different.
“Before I had all the health problems and stuff I used to love climbing trees, hanging out with my friends, playing rugby, basketball, basically everything a kid my age would love to do,” says Jesse James Hereora.
“The pain that comes with it, I’d rate it about an eight out of ten. Since I’ve been in pain for so many years, I’ve kind of adapted to it,” Jesse says.
After months of worsening symptoms, multiple doctors and scans eventually confirmed Jesse had Median Arcuate Ligament Syndrome (MALS), a rare condition where a ligament compresses an artery supplying blood to the stomach.
Despite three separate diagnoses from specialists, the path to treatment has been anything but simple. Two scheduled surgeries in New Zealand were cancelled and the whānau has now been told Jesse must undergo further testing to reconfirm a condition already diagnosed.
For his mother Jacqueline, who has been his full time caregiver and advocate, the past three years have been a relentless fight to get answers and support.
“Within six weeks we were booked in to have the operation. Two weeks later, three days before the operation, they said there had been an emergency, which I understand. They rebooked it two weeks later, then two days before we were meant to travel to Auckland they called and said they could no longer do the operation for my son. I was gutted. I just thought, what am I supposed to do as a mother?” says Jacqueline Hereora.
“It took him 10 letters just to get one scan done for Jesse because they kept declining him for MRIs and CTs,” Jacqueline says. “When we went back to see the doctor he turned around and said, ‘you were right Jackie’ – he’s got MALS,” she says.
Jesse’s medical journey is also complicated by several other conditions including Ehlers-Danlos syndrome, Chiari malformation, POTS, Scoliosis, Chronic fatigue and other health challenges.
After years of delays and cancelled treatment in New Zealand, the whānau are now turning to medical treatment overseas for help. Specialists in Australia have experience performing the surgery Jesse needs, but accessing that care will come at a significant cost.
The family is hoping to raise $50,000.00 to cover private surgery in Australia, specialist consultations, travel, accommodation and Jesse’s post-operative care.
Jacqueline says fundraising is their only hope. “I don’t have money, I’m on the carers’ benefit”, she says. “I’ll probably get in trouble for fundraising like I have before, but I’ll do whatever I have in my power to help my son live a normal life” she continues.
Despite everything he’s been through, Jesse still holds tight to the future he hopes for.
“Become a fully qualified builder and be a professional pool player too,” Jesse hopes.
For now, the whānau continue their fight, driven by a mother’s determination and teenager’s hope that one day he’ll return to the life taken away from pain.
If you’d like to tautoko Jesse and his whānau please visit their givealittle page:
