Carrie has a rare genetic disorder, atypical Friedreich ataxia, a degenerative condition that leaves her with muscle spasms, neurological pain, low iron, and vision limited to about 1m with glasses on. The bubbly Kokopu School student finds her mobility changes depending on how well she is feeling. Some days, she is able to walk a short distance without any aid, although her crutches are always nearby .
Other days, Carrie has to use a wheelchair and the comedian-in-waiting is already practising jokes about the situation. Mum Laura, who asked their family name be withheld for security reasons, said Carrie was a great kid who liked pop star Pink, performing and dancing when she can — often while kneeling down. “She just gets upset because her friends are all into gymnastics and it really frustrates her.
At playtimes, she hangs out in the school library,” Laura said. Carrie hoped to run a hotel designed for people with disabilities, Laura said. Though her symptoms began when she was 18 months, Carrie was about 8 when diagnosed with Friedreich ataxia — and the diagnosis came about only because her UK-based grandmother, who also has the condition, insisted she be genetically tested.
Laura said the atypical side of the condition meant Carrie’s strain was extremely rare, with only two other people in New Zealand having the same strain. Because of the rarity of her condition, Melbourne doctors specialising in Friedreich ataxia hope to do more testing on Carrie, with the aim.
