After she was born, doctors asked Julia Tiffen's parents if they wanted to "redirect care". She's now moving around and has begun speaking. Photo / RNZ / Jimmy Ellingham
After she was born, doctors asked Julia Tiffen's parents if they wanted to "redirect care". She's now moving around and has begun speaking. Photo / RNZ / Jimmy Ellingham
A new charitable centre to help children with disabilities has opened its doors in Palmerston North.
Little Stars is the brainchild of a family who know only too well what access to therapy at an early age can do.
The Planet Ryan Family Foundation is behind the centre - a charity started by Pip and Jules Cook, whose son Ryan and granddaughter Julia Tiffen live with severe disabilities.
Little Stars operates in Palmerston North’s industrial zone, but inside there is a colourful array of equipment and space for therapy.
“Little Stars came about when our wee granddaughter was born with cerebral palsy. We did not want her to miss out on what Ryan has missed on,” Pip Cook said, talking about access to therapy.
“What we wanted was to make sure our granddaughter did not have the same challenges we had, and also make that available to other families as well, as well as supporting families.
The centre's colourful interior is tucked away in Palmerston North's industrial zone. Photo / RNZ / Jimmy Ellingham
“It’s incredibly isolating bringing up a child with challenges.”
So far, 14 families have used the centre - without it even advertising.
Its founders describe it as providing a unique model for disability care and support for children and their families, who are alone in the community in the absence of such services.
Julia Tiffen has several hours a week of therapy at Little Stars, a centre set up by her grandparents' charity. Photo / RNZ / Jimmy Ellingham
The centre’s motto is “whole child, whole family, whole life”, to reflect what it is trying to do - be a place to bring services, such as movement and speech therapy, and families together.
It was hoped the children could progress as 2-year-old Julia has.
“It’s all that persistent, integrated therapy that starts to click, and it starts to work, and that early intervention. That is what most of us who have children come into adulthood that have severe disabilities, physically, have missed out on.”
Julia has cerebral palsy and survived a severe brain bleed when she was born.
Shortly after her birth, her parents were asked if they wanted to redirect care - in other words, let her die.
Now she has said her first word and has started crawling - movement skills on show when RNZ visited her at Little Stars.
“It’s basically taken two years to get here, to be able to move on her own,” said Julia’s mother, Nikita Tiffen.
“At the start of the year she was just still, just sitting, and she couldn’t even pivot or move. Then, about five months later - maybe April or May - she started to actually crawl and pivot.
Tiffen said Julia’s development was down to regular therapy, something not every child in her situation received.
“She’s super-mobile at the moment. We’re currently working on balancing and standing and, hopefully, walking.
“I think about the kids that miss out, because she’s had so much and it’s still taken so long to get here, so the kids that don’t get anything until they’re 5 - it’s just devastating.”
All the therapy did not come easily. Tiffen and independent disability advocate Jane Carrigan had to fight for it.
Carrigan said without early help, children with disabilities were sometimes left to languish - unlike Julia.
“What we’re seeing here [with Julia] is the difference between early intervention and no intervention until they go to school, and that’s most kids in New Zealand,” Carrigan said.
She also advocated for a child in Auckland born in the same circumstances as Julia.
“The family was completely unsupported until ACC finally came to the party when he was 4 years old, and that little kid is a million miles behind Julia.”
At Little Stars, lead therapist Heather Last was working with Julia to increase her movement when RNZ visited.
“We did a lot of playing with her feet because she’s got restricted movement in her feet, so we did that, and we did a lot of weight-bearing.”
That was the sort of activity children such as Julia needed, Last said.
“When you have cerebral palsy, it’s a developing disability. It’s never the same. If you learn to move in certain ways and it gets really established, the brain thinks that’s the typical, normal way of doing it.
“But, if you get in early and teach the correct way, then that’s what the brain learns.”
Little Stars has received a $60,000 community grant - enough to cover the rent for the first year.
It had also received plenty of donations, from equipment to signage, and people’s time to keep it running.
One donation of $5000 was going towards scholarships assessing children with disabilities to see what their needs were. If Little Stars was suitable for them, Carrigan could advocate for funding for their therapy.
