Dialog Box

Children's Tumour Foundation

NF1 Stories

Meet Our Heroes

Meet Alex

"From the moment he came home from the hospital, we just knew he would challenge us in ways that his brother Cristiano had not."

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Meet Bella

Bella is five, she is an only child and she loves to dance! When Bella grows up she wants to be either a vet or a doctor, she can’t decide. All she knows, is that she wants to help people. 

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Meet Chantelle

Chantelle is an NF hero, she is a big sister and the beautiful daughter of NF hero mum, Karla.  

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Meet Charlie

Charlie is 13 and an NF Hero! Like most teenagers, Charlie enjoys football, fishing, basketball, hanging out with his friends and gaming. 

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Meet Darcy

Darcy is 7 years old and was diagnosed with Neurofibromatosis Type 1 a few days prior to his 1st birthday. He has over 30 café au lait, lisch nodules and freckling. He has seen many health professionals and has had 3 MRI scans.

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Meet Emily

Emily was diagnosed with NF at 10 months old after x-rays revealed a pseudoarthrosis in her right tibia which was causing her leg to develop brittle bone and curve, affecting her ability to walk. Emily has undergone many surgeries since, including operations to amputate her right leg.

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Meet Edward

Written by Edward. 

My name is Edward Hayek. I am 14 years old, I have three brothers and I am the first in my family to be impacted by NF1.

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Meet Fiona

Written by Fiona

My name is Fiona bottom, I am 16 years old and and I am in year 10 at my local high school.

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Meet Hannah

I was first diagnosed at 16 while preparing for my Debutante Ball.  At the time, I had two growths on my back and one on my shoulder that led to a life-changing NF1 diagnosis.

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Meet Hayley

My name is Hayley I am 27 and I have a genetic condition called neurofibromatosis type 1 (NF1). You are born with NF; it can be passed on from a family member but for me that's not the case.

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Meet Jack

We are Lee and Melinda Shrimpton and live in Melbourne with our 2 children; Edie (4) and Jack (2). Jack was diagnosed with Neurofibromatosis Type 1 (NF1) in March 2018 at 8 months of age.

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Meet the James' Family

Like most kids, Townsville brothers Ethan and Nate James love to swim, ride, camp and play computer games like Fortnite and Roblox, but they are both also facing lifelong battles with NF.

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Meet Jasmine

Jasmine is 20 years old and living with Neurofibromatosis type 1. A genetic condition that was passed down through her family and that causes tumours to grow on her nerve cells.

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Meet Jessica

As a child, Jessica Szulerowski knew she had something, but it was never at the forefront of her mind, nor did it seem to really bother her.

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Meet Jesse F

Jesse is a big sports fan and dreams of becoming Australia's next big athlete, but complications with his NF have forced him to first overcome some major challenges, including a bone abnormality and amputation of his leg.

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Meet Jesse M

Jesse was diagnosed with Neurofibromatosis Type 1 (NF1) prior to birth after his mum, Natalie, had an amniotic reduction at 35 weeks. Like so many others, his family had never heard of NF until Jesse’s diagnosis. But, what makes Jesse’s case different to others, is that he also has a microdeletion.  

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Meet Julia

Marathons, enticer triathlons, cycling, fun runs – just looking at this list of activities is enough to tire some of us. For Julia Szulerowski these provided more than just an active lifestyle; they provided her with a way to cope with NF.

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Meet Kaitlyn

I was only three years old when I was first diagnosed with NF. I am the only one in my family to have been diagnosed with NF and sometimes this can be difficult, although I am glad none of my family has to deal with this condition.

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Meet Macy

At just three years of age, Macy had lost partial mobility down the left side of her body and was scheduled to have brain surgery.

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Meet Mykaela

Who knew some “smudges” on our 12 month old daughter’s skin, and reading a baby magazine article on eczema would change life so much!

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Meet Sienna

Sienna is two-years-old and was diagnosed with Neurofibromatosis Type 1 at just three weeks old.

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Meet Skye & Mikaela

Mother and daughter, Skye and Mikaela were both diagnosed with NF1, but they refuse to let that define them!

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Meet Spencer

At the fragile age of three, Spencer was diagnosed with Neuroblastoma, a children's cancer that required immediate treatment.

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Meet Thomas

I have only ever known a life of NF as I was diagnosed at 14 months and my mother also has NF1.

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Meet William

William is a five-year-old NF Hero, who loves to kiss and cuddle and is a great big brother to his sister Mia.

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Meet Xavier

Parents encourage their children to dream big, live large and be whoever they want to be. They tell them that if they apply themselves, anything is possible. However, for Mum Karla, this is not her reality.

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Meet Brian

Brian Shaw has lived 61 inspiring and accomplished years; all while being affected by Neurofibromatosis Type 1. Like all people who are affected by NF, it has been an interesting journey. At just 18 months old back in 1959, Brian has his first operation on a tumour near his left eye.

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