Levin couple Phil and Sue Smith felt blessed when they became parents 16 years ago to their gorgeous twins Abbey and Rachel. But their world came crashing down in January 2003, not long after the girls’ third birthday.
“I saw a lump sticking out of the side of Abbey’s neck,” says Sue, 50. “I thought, ‘That’s odd –that wasn’t there yesterday.’” At first a doctor dismissed the lump as a swollen gland. But within a few weeks, the toddler’s speech became slurred and she began to lose coordination. Recalls Sue, “Overnight, she went from being a little girl who ran and jumped all day, to someone who could only be out of bed for 30 minutes before she had to go back to sleep again.”
The Smiths again sought medical help. This time, Abbey was given a chest X-ray. “The doctors said they had found something and we needed to go to Starship children’s hospital to have the lump removed. “Maybe we were being naive, but we still thought it was just a funny gland.”

The twins aged three, around the time of Abbey’s diagnosis
Two days later, a series of tests at Starship revealed the worst. Specialists found tumours behind the toddler’s eyes, in her brain, neck and shoulder. Tells Sue, “They told us it was like spaghetti and it was growing everywhere.”
Abbey was diagnosed with Neurofibromatosis type 1, a rare genetic disorder that causes multiple tumours to grow along nerve tissue and increases the risk of developing other cancers in the body. Says Phil, 53, “The doctors told us there was nothing they could do.
The disease was inoperable because most of the tumours were in her neck and there was no treatment. We had to have a three-year-old referred to palliative care.” Sue adds, “We were told Abbey wouldn’t live to see her fifth birthday.”

The sisters on their first day of school; at Camp Quality in Northland in 2008
Thirteen years on from her diagnosis, Abbey is a bright young woman who in many ways is like any other teenage girl. The 16-year-old loves movies and computer games, and dreams of one day getting married, having children and opening a patisserie.
But the severe pain in her chest, neck and shoulder can be debilitating, and she is on constant pain medication to get her through the day.“Our little girl stopped smiling and laughing from the age of three until she was 12,” reveals Phil. “We lost her for a while until we got the pain meds sorted.”
Abbey had only one course of chemotherapy when she was 15, but it was quickly stopped because it began to make her go blind. “I just woke up and couldn’t see properly,” explains Abbey.
Continues Sue, “There wasn’t enough hope pinned on the chemotherapy for us to continue with it if it was going to take her sight. This is all about quality of life.”

The couple reveal that Abbey must also have regular checks that monitor the growth of her tumours. One once grew 6cm in just six months.
Meanwhile, hanging on the walls of the Smith family home in Levin are studio portraits of Abbey, sister Rachel and their parents, taken every year. “Photos are important as we have never known how long we will have Abbey,” says Sue. “If you look at the pictures carefully, you can see the growth on the side of her neck getting bigger every year.”

At this year’s Waiopehu College Ball.
The tumour has wrapped around Abbey’s lungs, which makes her breathless if she runs. When she speaks, her voice sounds like a hoarse whisper due to its grip on her windpipe and oesophagus. Tumours are growing around her heart and into her spine.
Nerve damage means her left arm is often numb or aches. Abbey lives with daily pain and an uncertain future – yet the extraordinary teenager still makes the most of every day. Despite needing to have regular days off school, she still passed her NCEA Level 1 last year.
Says Phil, “Abbey just gets on with life. Whatever gets thrown her way, she deals with it.” Now there is renewed hope for Abbey as she is currently nearing the end of a six-week course of radiation therapy at Starship. Phil has taken leave from work in order to take Abbey to Auckland for her therapy sessions, while Sue remains in her job and is supporting Rachel at home.

Abbey with her Beads of Courage from the Child Cancer Foundation
The couple are fundraising on Givealittle to help with their expenses. Tells Sue, “People don’t realise how expensive it is having a sick child. While it’s subsidised now, Abbey’s pain medication cost close to $300 a week at one point.”
Watching Abbey grow up with her disease has been hard for Sue and Phil, but is also a challenge for her non-identical twin Rachel. The teen – who is a competitive swimmer and netballer as well as a qualified surf lifesaver – says she doesn’t take life for granted.
“It’s been hard for Abbey, but I am lucky that I have been able to put my energy into other stuff over the years.” In the meantime, the Smith family is pinning its hopes on Abbey’s new treatment – and relying on the support they get through the Levin Life Church.
“We have proved the doctors wrong for the past 12 years,” says Phil. “Our daughter wasn’t meant to ever start school and now she’s here at 16.” Adds doting Sue, “There have been two things that have got Abbey this far – our faith and her determination.”

Abbey’s twin Rachel, and parents Phil and Sue, are supporting her all the way.