Lily Johnstone has an incredibly rare disorder that makes her life incredibly difficult. To help her get out and about, Satan’s Little Helper equipped with her a cover for her stroller that’ll make her look and feel like a flying fox.
When Brenden says his daughter Lily’s condition is rare, he’s not exaggerating. She’s one of five people in New Zealand living with FoxG1 disorder and, when testing confirmed that Lily had it, doctors couldn’t tell Brenden and Lily’s mum Georgia much about it.
“We got all our information about it from Google,” he says, “and, at that time, we didn’t know anyone else with it, so we felt like we were on our own.”
FoxG1 is a rare genetic disorder that causes a wide range of symptoms and can include several global developmental delays and movement disorders.
“Lily has severe development delay in almost all areas of her life,” explains Brenden. “She is tube-fed and she struggles to breathe, so she has a tracheostomy to help with that. She can roll over but that’s as far as we’ve got with her mobility and she’s almost two years old.”
Found a community
After Lily’s diagnosis, Brenden and Georgie say they felt isolated and didn’t know what they could do to properly care for their girl. Thankfully, Brenden was put in touch with other families in the same situation.
“I managed to talk to Rare Disorders NZ, which helped us get in touch with other parents in the same situation. There’s also an international Facebook group that we’ve used to chat with people going through the same thing, which has helped.”
Meanwhile, Brenden says it’s 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.”
Because of Lily’s reflux, Brenden says it’s hard to get out and about with her. To try and fix that problem, Satan’s Little Helper sent him a waterproof cover for her wheelchair.
“It’s made things 100% easier,” he says. “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 but now we can wipe it or wash it and the cover can go back on in an hour or two.
Helping her get out and about
The cover is decorated with little foxes – for “Lilly the FoxG1 girl!” says Brenden.
“The cover arrived just as she was discharged from Starship, so she got to roll out in style! It was also the day before her birthday, so that was a nice boost.
“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.”
An additional benefit is that it takes some financial stress away from Brenden.
“The chair goes back when she’s finished using it, so we want to keep it as nice as possible. 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!”