When Nelson couple Fiona and Neil Helleur welcomed a tiny foster baby into their family 20 years ago, they had no inkling of the heart-wrenching journey that was to come.
Jacob was just 10 months old when the Helleurs first took him in.
Neil was a support worker for the then Child Youth and Family (CYF) while Fiona was very involved in the local church, running school holiday programmes and studying for a Diploma of Ministries.
The pair had previously fostered several children on a short-term basis and also provided a loving, stable day-time environment for many others.
They also have three children of their own – Emma (31), Ben (30) and Matthew, (25).
Wee Jacob was meant to be another short-term placement.
"Originally, it was going to be a few days," tells mum Fiona.
"Then that was extended to a week, then six weeks. Then they couldn't find a placement, so they asked if we would consider taking him permanently."
There was no need for deliberation.
Jacob had won the family over and four years after the tot entered their lives, Fiona (55) and Neil (63) were granted legal guardianship and custody.
Their youngest boy turned 21 in December. Tragically, there was little to celebrate.
Just months before the milestone birthday, the Helleurs were told their beloved son was losing his battle with life.
It was the cruellest of blows for a family who had watched Jacob become increasingly unwell, as they had fought to give him as normal a life as possible.
"Jacob has always been our son," says Fiona, near tears.
"He's been an integral part, not just of his siblings in our immediate family, but in our extended family too."
The harrowing journey began shortly after Jacob's second birthday when he was diagnosed with pauciarticular arthritis in one knee.
"The joint was swollen, so it made things really difficult for him," explains Fiona. "He struggled to get around like other children."
But it soon became clear there was more going on than just the arthritis.
In November 2010, Jacob, then 11, was flown by air ambulance to Christchurch Hospital so doctors could investigate mounting medical problems, including stomach and growth issues, as well as fluctuating electrolyte levels.
Jacob was so sick, doctors admitted him straight into the HDU (high dependency unit) with Fiona, now his full-time carer, staying most of that time at Ronald McDonald House to be near her boy.
It wouldn't be his last trip to Christchurch.
Numerous visits to doctors and specialists, along with a slew of tests, revealed Jacob also had irritable bowel disorder, complicated by Crohn's disease, a chronic inflammation of the intestines, and osteogenesis or brittle bone disease.
He is coeliac, has scoliosis (a curve in his spine) and severe psoriasis.
In 2012, he was admitted to intensive care, with doctors diagnosing a life-threatening electrolyte imbalance.
A catheter line inserted in his neck to deliver medication later became infected and Jacob, now with sepsis, again wound up in Christchurch Hospital.
The family was told he could die, but Jacob wasn't ready to go. He spent five months in hospital before returning home to Nelson.
Tells big sister Emma, "Jacob really just grew up in a hospital. When he wasn't in Christchurch Hospital, he would often be in Nelson Hospital. It's been so hard to watch him go through this."
Then, on Christmas Day 2015, Jacob's knee gave way as he stepped off a small kerb, smashing seven bones in the fall.
Four months later, he broke his leg rolling over in his sleep, leaving him 3cm shorter, something doctors had no way of fixing.
Confined to a wheel-chair, the teenager – a prolific gamer, who at one stage thought about becoming a chef – lived the best he could with his limitations.
Friends would take him out to play Pokémon Go and Emma remembers his excitement at once being taken to a Foo Fighters concert.
But it was another accident, on January 3 last year, that has had devastating consequences.
"We're not sure, but we think he fell asleep in his computer chair and fell out of it," tells Emma.
"He broke his pelvis in four places, re-broke his femur and his other femur, and crushed his knee.
"He never got better. In September, we found out that what he has is what is described as 'unsustainable with life'."
Jacob has been in a hospice since April 11 and Emma has started a Givealittle page to lighten the financial burden on her parents, who have spent a small fortune on doctors' visits, medication and travel over the years, and to fly Jacob's brothers home from Perth to be by his side, "to be a whole family again".
Says his mum, "Jacob is a beautiful person. He's always been a strong person – he's had to be. But he's also gone through all the emotions you would expect from someone growing up in hospital."
Adds Emma, "I have so much love and respect for my parents. At no stage in this really hard 20-year journey did they ever, ever put this into the too hard basket, where so many others may have. It has always been, 'We'll do whatever we have to do to get through this.'
"Jacob has always been part of our family – their son and my brother."
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