Foxton Beach girl Lily Johnstone, 2, has the rare Fox G1 disorder.
Foxton Beach girl Lily Johnstone, 2, has the rare Fox G1 disorder.
When Brenden Johnstone says his daughter’s condition is rare, he’s not exaggerating.
Lily, aged 2, has a rare genetic disorder called FoxG1 that causes a wide range of symptoms and can include developmental delays and movement disorders.
She is one of five people in New Zealand known to have FoxG1.Only 1000 people worldwide are known to have the disorder, although diagnosis rates are improving.
Lily is fed through a tube into her abdomen. She struggles to breathe so has had a tracheotomy tube surgically inserted into her windpipe at the front of her neck.
“Lily has severe development delay in almost all areas of her life,” he said.
“At that time, we didn’t know anyone else with it, so we felt like we were on our own.”
The couple felt isolated and just wanted to know how they could properly care for their daughter. Help came through talking to other families in similar situations.
It had been difficult to align Lily’s care between various different hospital departments.
“It’s been a battle trying to get cohesion between the services Lily needs. We’ve had a few issues, because we’ve been seen by three different hospitals and communication between them has been poor.”
Joining the social media page Rare Disorders NZ helped them get in touch with other people in similar situations. They also joined an international Fox G1 chat group.
“We have found a lot of information through talking to people from all over the world. No one is in the exact same position. They’re in the same boat, they’re just seated on a different seat. There are always similarities, so you can get advice.”
Leaving the house was hard sometimes because of Lily’s reflux. It was the little things that made a big difference, like the recent donation of a water-proof cover for her pushchair from a charity called Satan’s Little Helper, a charity run by Hell’s Pizza.
“It’s made things one hundred per cent easier,” he said.
“She has a lot of reflux issues, so it means that when we get her up and about, her pram is a lot easier to clean if she spews. Before the cover, cleaning was so difficult. It doesn’t come apart very easily and would end up getting pretty grubby.”
Foxton Beach girl Lily Johnstone, 2, in her new pushchair.
“Now, with a specially made cover, we can wipe it or wash it and the cover can go back on in an hour or two. It had to be custom designed to fit. It has to be hand-made and wouldn’t be cheap.”
The cover was a boost as it arrived just as Lily had been discharged from a month-long stay at Starship Hospital in Auckland. The following day she celebrated her 2nd birthday.
“We’ve been able to do heaps more together. The cover allows us to pop her in a chair anywhere we go, and we don’t have to worry about it getting damaged. The chair goes back when she’s finished using it, so we want to keep it as nice as possible,” he said.
“It should last her a good five years, but it’s also on our insurance, so if anything gets damaged, we have to pay for it. Now, we can worry less about an unexpected financial outlay.”
The cover is decorated with little foxes.
Lily has an older brother Cohen, aged 4.
- Public Interest Journalism funded through NZ on Air.
