Our NF Heroes

We are inspired by the stories of all our NF Heroes – adults and children. NF affects all genders and ethnicities, and behind every person diagnosed is a different story filled with hopes, fears and challenges. No two cases of NF are the same.

Meet Nikkita, charlotte and sophia

“You never know what’s around the corner with NF, you’ve got no idea what the future holds."

Nikkita was diagnosed with NF1 at seven years of age when her mum wanted to find out why she was struggling so much with school. A paediatrician diagnosed her from her café-au-lait marks and unusual freckling, as well as her learning difficulties.

Now the NF gene has been passed onto Nikkita’s two daughters, Charlotte and Sophia, with youngest, six-year-old Charlotte having the most complex NF of the three.

Not only is Nikita concerned for her children, but as a woman in her 30s, she also need to be aware of new tumours as NF can increase the chances of developing some cancers, such as breast cancer.

Despite living with the complications of NF, such as visible lumps and bumps, learning difficulties and having more questions than answers, the family bravely and positively face each new challenge.

Meet Jack

“When Jack was diagnosed with NF, our world changed immediately.”

Jack was born with a bowed leg, the result of a condition called, Tibial Dysplasia - a rare symptom of neurofibromatosis type 1 (NF1), occurring in around 1 in 150,000 births.

As soon as Jack was old enough to stand and begin to walk, he required an AFO (Ankle Foot Orthotic) to support his leg bone. As he grew, he watched his peers run, jump and climb and he wished he could keep up.

By the time Jack was four, he had already undergone three surgeries on his leg to correct bone bowing, which had reached 85-degrees at the time of his first major surgery.

Now six, Jack has had more MRIs, needles, surgeries and specialist appointments than any person should have in their lifetime.

Meet Mia-Louise

Mia was diagnosed with NF1 at 18 months old and remembers a childhood consisting of frequent appointments and checkups mostly to do with an optic nerve tumour behind her right eye.

As she grew, Mia struggled with concentration and knowledge retention at school and wondered if she would've been smarter, faster or better at sports is she didn't have NF.

As a teenager she faced challenges with body image and anxiety and depression, caused by a condition that is unpredictable and can be both visible and invisible.

Thanks to NF Connect, a monthly support group hosted by the CTF, Mia has since found a community of close friends across the country.

"I don't remember what life was like before I knew I had NF and I don’t know what my life would be like without it. It’s just a part of me that will always leave me questioning."

Meet penny

Penny's journey with NF1 began when she was 15 months old. When the paediatrician told the family that the many cafe-au-lait marks over Penny's body could actually be a clinical sign for NF1, they had never heard of the condition.

Unexpectedly, the family were off to see a speech therapist, physiotherapist, occupation therapist, paediatrician, ophthalmologist and oncologist.

A tumour sits behind Penny's eye making her eyesight weaken, but she wears her bright red glasses with style and grace!

For the past 5 years Penny has visited the Queensland Children's Hospital to see her oncologist and have MRI's on her brain and spine twice a year and her ophthalmologist at least twice a year. Appointments at the hospital are long and exhausting, but Penny is happy to have them as she knows all her doctors are looking out for her NF.