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At the Children’s Tumour Foundation we are inspired by the stories of those impacted by NF. Adult or child, NF affects all walks of life, and behind every person diagnosed is a different story filled with hopes and fears, challenges and achievements, and a message of strength and optimism – these are the stories of our NF Heroes.
"From the moment he came home from the hospital, we just knew he would challenge us in ways that his brother Cristiano had not."
"It was suspected that Alex had NF1 as early as 6-months of age. Since then, Alex has only ever known a life of appointments, surgeries, and disruption."
I was 4 years old when I was diagnosed with NF1. I’m the only one in my family to have NF, so that must mean I am special. This is my story.
In the last few years, Brian has tried to be an active participant in all the fundraisers that have occurred.
We kept saying to ourselves why is our sweet little Carys being burdened with this awful genetic disease?
Darcy is 7 years old and was diagnosed with Neurofibromatosis Type 1 a few days prior to his 1st birthday.
Sometimes one single act of kindness and a single friend is all it takes to stem the tide of hurt.
Ellen is a bright, bubbly 23-year-old with a heart of gold. Ellen also has NF2, a rare genetic disorder affecting 1 in 25,000-40,000 people
Emily was diagnosed with NF at 10 months. Emily has undergone many surgeries since, including operations to amputate her right leg.
I was diagnosed with Neurofibromatosis Type 1 when I was just 2 weeks old at the same time as my father.
On the 27th of August 2017, Grayson's journey with NF1 began. This is the story of a family on a mission to conquer NF, while turning one's trash into their treasure.
I count myself one of the lucky ones. I may have NF, but that does not stop me from aiming high...
My name is Hayley, I am 27 and I have a genetic condition known as NF1. You are born with NF; it can be passed on from a family member but for me that's not the case.
As parents, it's horrible feeling a sense of hopelessness against a disease that has many symptoms that can arise at any time.
Jackson is only 12 years old, has fought for his life 7 times – all before the age of 3. He lives in constant pain, but he is also the embodiment of a NF Hero.
At 9, Janu was diagnosed with NF. A secret that she has been holding on to for 2 decades. Being from a close Tamil community, her family felt it was best to keep this news quiet.
Jasmine is 20 years old and living with NF1. A genetic condition that was passed down through her family and that causes tumours to grow on her nerve cells.
The hardest thing I've ever done is to take Jesse into the pre-op surgery room and kiss his leg goodbye.
Jesse was diagnosed with NF1 prior to birth after his mum, Natalie, had an amniotic reduction at 35 weeks. What makes Jesse’s case different, is that he also has a microdeletion.
My NF journey might have a lot of ups and downs, but I keep marching on.
Marathons, enticer triathlons, cycling, fun runs – just looking at this list of activities is enough to tiresome of us.
Kyson’s father had NF1, so I always knew it was going to be a 50/50 chance of Kyson also having it.
Libby is a Harry Potter loving, NF2 hero, who dreams of being a veterinarian when she grows up. Libby also has Neurofibromatosis Type 2.
Lily-Rose was living with debilitating pain from the age of 2 as she dealt with an orange-sized plexiform neurofibroma on her spine.
We don’t want NF1 to define who Lyla is, however, NF1 will always be a part of her and we want her to be proud and comfortable with that.
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.
Maddy is 13 years old and has Neurofibromatosis Type 1. This story has been written by Maddy and teaches us that being different is okay.
We had never heard of NF and were completely numb listening to the suspected diagnosis.
Being told I would need surgery was a huge shock following six years of stability. It was a realisation of the volatility of this disorder.
Shelby is 15 years old and already she has experienced more trauma and heart ache than most would see in their lifetime.
Sienna is two-years-old and was diagnosed with Neurofibromatosis Type 1 at just three weeks old.
At the fragile age of 3, Spencer was diagnosed with Neuroblastoma, a children’s cancer, that required immediate treatment.
After keeping her NF story quiet, Taylah has decided to own her NF & hopes to inspire others to do the same.
William is a five-year-old NF Hero, who loves to kiss and cuddle and is a great big brother to his sister Mia.
Xavier’s previously straight spine was at a 28-degree angle and just 12 months later it had progressed a further 10 degrees.
© 2021 Children's Tumour Foundation of Australia