Kiara Keeps Beating the Odds
- Apr 21
- 5 min read
Updated: May 5
Christchurch nine-year-old Kiara Milner has defied expectations from the beginning. It was revealed prenatal that part of Kiara’s cerebellum was outside her skull and doctors told her family to prepare for the worst.
But remarkably Kiara survived her birth, which her grandmother Angela Milner describes as her greatest milestone. The exposed cerebellum was removed surgically within 24 hours, then just five days later a shunt needed to be inserted surgically into her brain to drain a build-up of fluid (called hydrocephalus) into her stomach.
She was also diagnosed with a rare and serious condition that adversely affects the development of the eyes and brain known as Sonic Hedgehog Syndrome.
Despite all this, Angela says Kiara continues to prove every prediction wrong and has now undergone multiple major surgeries, including procedures on her eyes and hips.
“Every step she takes, every word, every achievement, no matter how small it may seem to others, means everything to our family. We do not take a single day with her for granted.”
Presently, life for Kiara involves regular medical appointments and specialist care from physiotherapists, speech therapists, occupational therapists, paediatricians, neurosurgeons and ophthalmologists.
She is regularly taken to Peke Waihanga – Artificial Limb Service & Orthotic Service in Burwood, Christchurch, for Ankle Foot Orthosis (AFO) for fittings and other ongoing support.
Kiara’s family manages her appointments and day-to-day care, as well as the routines of everyday life – it has often been stressful, exhausting and isolating.
“There are many difficult days, moments of uncertainty, and times when the system can feel overwhelming,” Angela says.
Accessing Individualised Funding (IF) around five years ago has made a big difference to the family as it has enabled essential support, including respite, for the people looking after Kiara – support that simply wasn’t available before.
“We were always Kiara’s support to start with. To be truthful, we hardly used any funding prior to IF because we didn’t properly understand how to access it. The way that it was explained wasn't particularly good. So we probably lost out on an awful lot of funding at the very beginning.”
The Milners later connected with Manawanui through their Needs Assessment Service Coordination (NASC) after researching a variety of host options.
“We looked into several other providers (hosts) but felt that Manawanui was the best fit. We’ve always found them to be helpful, approachable and incredibly kind. They’ve offered support whenever we’ve contacted them. There have been times when I’ve called in tears, feeling exhausted and overwhelmed, but they have always met us with patience, compassion and reassurance. Their staff have made us feel heard and supported at times when we have needed it most.”
Angela adds that Manawanui has made IF easy to understand and access.
“It’s been a breeze. The process has been simple and easy to follow, and we particularly appreciate the regular live updates and information they provide.”
Importantly, IF has meant more flexibility with how Kiara’s funding is used.
“We bought a lot of things to help with her studio, so sensory items, swings and things like that. We were also able to partially fund a specialised car seat through IF to transport Kiara safely, which we hadn’t been eligible for through ‘normal funding’.
So what would you say to someone considering moving to IF?
“People need to know there’s help, advice and support out there. If you don't, it's a very isolated community to be in. I wouldn't even want to contemplate the thought of life without IF. There'd be lots of ambulance at the bottom of the cliff scenarios.”
Instead, they’ve been able to be proactive with Kiara’s care.
“Because we know that the support she receives now will shape her future. We want to give her every opportunity possible and avoid more significant health challenges later in life.”
Angela says another significant moment in Kiara’s journey came when she travelled to the Centre of Movement (CoM) in Burleigh Heads on the Gold Coast for intensive therapy.
“Before attending, Kiara mainly used a wheelchair. We went there hoping it might help, but not truly knowing what was possible. By the end of the programme she was walking with quad sticks.
“Watching her take those steps was something we never thought we would see.”
"Moreover, the therapy Kiara received through the centre helped her progress in other areas. It gave her confidence, independence and a belief in herself. It has allowed her to do more for herself, experience more of the world around her, and have opportunities that once felt out of reach,” Angela says.
“The difference it has made to her growth, both physically and emotionally, is impossible to put into words. For Kiara, it has meant greater independence and the chance to live life more fully.”
While Angela says access to that level of therapy is New Zealand remains limited, CoM recently opened facilities in Rotorua and Christchurch.
“Families are incredibly grateful that programmes like the CoM are now available in NZ, giving children like Kiara the opportunity to access intensive, life-changing therapy without the need to travel overseas. We can’t thank them enough.”
From April 1, Disability Support Services (DSS) removed many of the existing spending restrictions on flexible funding, allowing people to use their allocated budgets more freely based on their support plans.
Angela says these changes may open up new options for Kiara’s therapy in the future.
“It's probably too early to tell for us, as I have planned our funding for the year. So far we haven’t been able to use Kiara’s funding for intensive therapy, and are hopeful the rule changes make this possible after we review our funding in August.”
In the meantime, Angela says the family continues to plan for Kiara’s future while managing the day-to-day demands of her care.
Given Kiara’s life expectancy is unknown, her family lives every day with both hope and fear.
“We have learnt to celebrate the smallest victories and to make the most of every moment together.
“We will all continue to stand beside her, advocate for what we believe is best, and support whatever Kiara wants for her future. She’s already shown more strength and determination than anyone thought possible, and we could not be prouder of her.
“Fighting for support for a child with complex needs can be exhausting, and at times it feels like you have to fight for every single thing.
“But Kiara is worth every fight.”
If you've been considering accessing Individualised Funding or switching hosts to Manawanui, click here to get in contact.
