'We'll stay STRONG'

THESE THREE GENERATIONS OF WOMEN ARE LIVING WITH THE SAME LIFELONG GENETIC CONDITION

- Ruth McCarthy

Looking after a lively 6 and 7-year-old is no easy feat, but thankfully single mum Nikkita Dane has an amazing support network in her mum, 65-year-old Neridah Crawford.

In fact, the family all live nearby in Nowra, on the south coast of NSW, meaning they regularly see each other for treasured quality time. But there’s another reason behind their close-knit dynamic. “We all share an unbreakable bond – not just of love but because we all have the same incurable genetic condition,” 32-year-old Nikkita reveals to WHO.

At just 6 years old, following a visit to a paediatrician after struggling with her reading and speech at school, Nikkita was sent for tests and diagnosed with neurofibromatosis (NF) – a condition that causes tumours to form on nerve cells throughout the body and is characterised by brown skin spots called café-au-lait marks, and benign tumours known as neurofibromas.

Nikkita was diagnosed with Type 1 (NF1), and while most with the disorder do dodge major medical complications, in some cases the condition can be severe and debilitating, causing blindness, deafness, learning difficulties and chronic pain.

“I’d never even heard of it,” Nikkita’s mum Neridah says, adding that while the news was overwhelming and upsetting, it brought a sense of clarity. “Having a confirmed diagnosis was a relief, as we had answers as to why Nikkita had a cluster of café-au-lait birth marks under the arms and why she was struggling at school. They were all tell-tale signs of NF.”