On The Up: Community support gets Whangārei teen specialist health help
The condition used to be so painful and leave Carrie so tired she would often fall asleep in class, said mum Laura Kunicich.
But last year the family were able to travel to Melbourne to meet with doctors specialising in Friedreich ataxia.
The team, led by professor Martin Delatycki of the Murdoch Children's Research Institute, spent two days testing and questioning Carrie, to find out more about her symptoms.
The specialists recommended Carrie take baclofen, a medicine which helps relax muscles and can reduce muscle spasms, Kunicich said.
This has been a game-changer, reducing Carrie's spasms which made her limbs jump around – often waking her at night – and reducing muscle tightness, improving her ability to walk unaided.
But the Melbourne visit would not have gone ahead without community support, as Kunicich, a widow, often had to take time off from her part-time job at an accounting firm to look after Carrie.
The family started a fundraiser by selling kindling, but found so many people in Whangārei wanted to help that Kunicich started a Givealittle page for donations.
After NZME ran a story, further help came from an anonymous donor who paid for the flights to Melbourne.
The extra support meant the family, including younger brother Keifer, were able to make the most of the Melbourne trip, visiting museums, Melbourne Zoo and Legoland.
Kunicich said she was blown away by the generosity of all those who donated.
'It really surprised me – you think you're just one person in this town but there was a lot of support.'
She is again running a Givealittle fundraiser to return to Melbourne later this month, so Carrie can have a check-up with the specialists, a trip likely to be needed each year.
Despite the cost and effort of having to go to Melbourne, the input from the specialists has been invaluable, Kunicich said.
Carrie is now thriving at Whangārei Girls' High School, where she uses a motorised wheelchair to get around the campus.
Last term, she was recognised for academically excelling in 12 different subjects.
In her spare time, Carrie likes listening and dancing to K-Pop – Stray Kids is her favourite band – and she enjoys swimming. She also gets relief from going to a chiropractor.
Kunicich said the change in Carrie's energy levels has been so dramatic, she now even offers to help with housework.
'It sounds simple but baclofen has been a game-changer.'
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