On The Up: Community support gets Whangārei teen specialist health help

Carrie and Laura Kunicich are grateful for community support, which helped them get to Melbourne for Carrie's specialist treatment. Photo / Denise Piper

NZME is running On The Up – a national campaign showcasing amazing stories of inspiration, success, courage and possibilities. Reporter Denise Piper finds out more about Whangārei teenager Carrie Kunicich, who is thriving despite having a rare genetic condition, thanks to a community-funded visit to specialists.

A treatment for muscle spasms has been like a miracle cure for 13-year-old Carrie Kunicich, says her mother.

The bubbly and intelligent teen has atypical Friedreich ataxia, a degenerative condition that leaves her with muscle spasms, neurological pain, limited mobility, low iron and vision limited to about 1m with glasses on.

Just three people in New Zealand have atypical Friedreich ataxia, and Carrie’s type is so rare there is only one other family in the world, based in Turkey, which has her strain.

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 Kunicichs – Carrie, Laura and Keifer – need to travel to Melbourne again in late May so Carrie can have a check-up with specialists in the Murdoch Children’s Research Institute. Photo / Denise Piper

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.”

Carrie Kunicich is a bubbly and intelligent 13-year-old who now has energy for music, schoolwork and even chores.

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.”

Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.