Liv Vanstone, 3, has been accepted into NAPA for intensive therapies to help her development and eating. Photo / Alyssa Smith
A North Taranaki family is raising funds for important intensive therapy to help their child’s development.
Lucia Habanec, from Egmont Village, 6km south-east of New Plymouth, said her daughter Liv Vanstone, 3, has been offered a spot at the Neurological and Physical Abilitation (NAPA) centre in Sydney, Australia, this September.
“The first 1000 days of a child’s life are super important for their development, especially for children with special needs. These children require a lot more hands-on support and we want to do what we can for our Liv to challenge her and play catch-up,” Habanec said.
“We’re so lucky to have got in quickly. We know of a few families who have been to NAPA and they sing their praises about how they’ve helped their children’s development.”
Liv will be at NAPA for three weeks of block treatments, consisting of four-hour intensive treatments, five days a week.
“It’s said that three weeks at NAPA is the equivalent of six months of development. Our Liv is a happy girl but is behind her peers in her development.
“We know this treatment at NAPA will benefit her greatly and help her achieve her milestones. These include standing, walking and speaking. As an audiologist with a background in speech and language therapy, I know the importance of block therapy treatments and how much they can help establish and reinforce mechanisms for change compared to once-in-a-while sessions.
“Liv has had limited access to consistent therapies here, so we have had to look elsewhere to get the best support we can for her.”
After a difficult birth, Habanec said Liv was diagnosed with Down Syndrome when she was about a month old.
“We did the 12-week blood and scan test and later learned it was a false negative result. We were told we had a one in 1700 chance of Liv having Down Syndrome. At that time, it meant there was nothing to watch for and no need for further tests.
“We had hoped we’d do a homebirth as we had done with her brother Ezra (6). We were ready when the midwife said Liv was breached. I had a c-section which became intense - Liv turned blue and couldn’t breathe or be fed through a tube so she had to be flown to Waikato with her dad while I was in hospital recovering. Ezra stayed with his daycare teacher, allowing life to remain somewhat normal for him.”
She said Waikato Hospital staff discovered Liv’s oesophagus was split in two.
“It was repaired but the site is weak and can narrow up again, meaning she routinely needs a procedure where a balloon is used to widen it again. I was told the last time this condition was in Taranaki was 20 years ago.”
As well as helping her daughter reach her physical milestones, NAPA can teach Liv how to chew and swallow safely.
“At the moment she is having purees and soups as we don’t want the food she doesn’t properly chew to get stuck in the repair site, leading to long hospital stays.”
The treatment costs AUD$12,000 (NZ$12,935.94), with the family also needing to cover transport, accommodation, flights and travel insurance.
“Ezra will be coming with Dave and I because no one was available to look after him. At the same time, we don’t want to keep him away from the reality of things. We often have to be apart for a long time when Liv has long procedures, so this will be nice for him to be engaged and involved.”
She said the benefits NAPA would have for Liv were priceless.
“Australian children get this funded through NDIS. They do their three-week intensives and then can have six weeks off and go back again.
“In New Zealand, families do what they can to attend at least once and bring back the learning at home. We’re estimated to need $25-30,000. Anything spare would go towards future treatment rounds like Liv’s lucky Australian counterparts get. We’re doing what we can but need some help and would be beyond appreciative.”