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: