If you have an account please sign in to continue
Dialog Box
"Ainsleigh was only 9 1/2 weeks old when a specialist first mentioned she might have Neurofibromatosis."
"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."
"It came as a complete shock to us when Alex failed a regular eye test at age 6. Looking back we had thought he was clumsy, but we hadn’t considered vision loss being the reason."
"Born at 30 weeks, Alex spent a couple of months in hospital, but we knew immediately she carried the NF gene as she was born with a large café-au-lait spot on her stomach."
After months of trying to navigate the medical system, Alison and her husband finally found a doctor that would listen and it was then that William was sent for genetic testing.
At three months of age, Archie was diagnosed with a kidney condition. Archie had several surgeries, but little did we know at the time of these that Archie actually had NF.
Having NF has been a challenge for Bethany – physically, socially and emotionally. Like many with NF, she has faced bullies and lived with a lack of confidence and self-esteem.
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.
I never say ‘Why me?’ Once you get to know a person with NF the NF symptoms disappear and their personality takes over.
Brian has lived 61 inspiring and accomplished years; all while being affected by NF1. At 18 months, Brian had his first operation.
Mother & daughter, Carey & Jess, are facing their biggest NF battle yet. They have begun chemo in order to save Jess' vision. Read their inspiring story here.
Diagnosed with NF1 at just 18 months, Cassie has come full-circle, learning to accept her body and helping others do the same.
Chantelle is an NF hero, she is a big sister and the beautiful daughter of NF hero mum, Karla.
Like most teens, Charlie enjoys football, fishing, basketball, hanging out with his friends & gaming.
Dad Steven has milder NF1 symptoms, but his kids have been dealt with learning disabilities and a life-threatening OPG.
Five-year-old Danika is the third-generation diagnosed with NF1. A new drug has kept her stage 3 brain-stem tumour stable.
Darcy is 7 years old and was diagnosed with Neurofibromatosis Type 1 a few days prior to his 1st birthday.
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 Neurofibromatosis.
Emily was diagnosed with NF at 10 months. Emily has undergone many surgeries since, including operations to amputate her right leg.
In many ways I have been fortunate to be able to address many of the major issues raised by my NF through surgery, but this has not been the case with my most recent diagnosis.
It wasn’t until I finally realised that my looks were the least interesting thing about me that I began to let go of my insecurities.
My name is Fiona Bottom and I am 16 years old. I was diagnosed with NF1 as a baby. At the same time, my dad was also diagnosed.
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 was first diagnosed at 16 while preparing for my Debutante Ball. At the time, I had 2 growths on my back and one on my shoulder that led to a life-changing NF1 diagnosis.
At 16 months old, genetic testing confirmed that Harlin has a spontaneous case of NF1. was diagnosed with NF1.
At two months old, Harrison was diagnosed with NF1. Despite his many symptoms, it has not stopped his love for life!
My name is Hayley, I am 28 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.
I hated who I was for so long. It took many years of working on loving myself to let all those negative thoughts go. I no longer see having NF as a bad thing.
Hudson is a normal, happy little boy who loves camping and technology. He is proud to wear his blue and green NF ribbon every day and loves it when people ask him about it. He will proudly say, “It’s for NF, which I have."
As anyone with NF knows, there are so many unknowns. You will never truly know when or if something will happen.
We are Lee and Melinda Shrimpton and live in Melbourne with our 2 children; Edie and Jack . Jack was diagnosed with NF1 in March 2018 at 8 months of age.
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.
Like most kids, brothers Ethan and Nate love to swim, ride, camp and play computer games, but they are both also facing lifelong battles with NF.
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.
Jesse is a big sports fan and dreams of becoming Australia's next big athlete, but NF has forced him to overcome some challenges, including amputation of his leg.
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.
I try to not let NF control my life. We only get one chance, and I don't want to waste it complaining and wishing I had another. I have been blessed with so many opportunities.
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.
We always thought Jimmy just had funky, unique birthmarks. Who knew they could be a soft marker for something as complex as NF1?
At 14 years old, Jordan was diagnosed with NF1. What followed was a whirlwind of events that nobody saw coming. This is her story.
Jo shares his son Joshua's journey, including 16 doctor's visits over the years to get a diagnosis of NF1.
Marathons, triathlons, cycling, fun runs. For Julia Szulerowski these provided more than just an active lifestyle; they provided her with a way to cope with NF.
I am a proud Aboriginal woman from the Kamilaroi nation of northern New South Wales and I have NF1.
I was only 3 years old when I was diagnosed with NF. I am the only one in my family to have been diagnosed and sometimes this can be difficult.
Kyson’s father had NF1, so I always knew it was going to be a 50/50 chance of Kyson also having it.
I was diagnosed with NF1 in 2010 when I was 30, I’m now 41. My diagnosis was made purely by accident when I went for my first skin mole check.
Both Sage and Liam try their best at everything and never let NF define them. It’s hard for them to navigate the many obstacles NF throws in their way, but you wouldn’t guess it.
Lenny is 7, has two brothers, but is the first to be diagnosed with NF1. He is a cheeky boy with a kind heart who loves mowing lawns, and fixing the house while walking around shirtless.
Lily-Rose was living with debilitating pain from the page of 2 as she dealt with an orange sized plexiform neurofibroma on her spine.
I don’t think the seriousness of her diagnosis really hit me, until I heard that phrase, “a grieving process”.
Misdiagnosed as birthmarks, plus a learning disability and hearing loss as a young girl, the pieces of the puzzle fell into place for Lynette when her son was diagnosed with NF1 at 13.
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.
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.
Three-year-old Mileah has been on the TiNT trial for 6 months. Nothing stops her from crawling and walking with her cane and achieving goals.
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!
Now that the faulty NF gene has been passed to my daughters, it's important to me that others with NF are aware of their options when planning a family.
I want to bring NF out of the shadows as you should not be embarrassed or unaware of your diagnosis. People living with NF should be educated and empowered to deal with it.
Shelby is 15 years old and already she has experienced more trauma and heart ache than most would see in their lifetime.
Sienna is three-years-old and was diagnosed with NF1 at just three weeks old. She has faced an uphill battle, but she is still fighting.
Mother and daughter, Skye and Mikaela were both diagnosed with NF1, but they will never allow that to define who they are!
Sol shares many things in common with his twin brother Leo, except his spontaneous diagnosis of neurofibromatosis type 1.
At the fragile age of three, Spencer was diagnosed with Neuroblastoma, a children's cancer that required immediate treatment.
I was diagnosed with NF1 at 6 years of age when an ED doctor mentioned to my parents the cafe au lait marks on my body could be a sign of Neurofibromatosis.
After keeping her NF story quiet, Taylah has decided to own her NF & hopes to inspire others to do the same.
I have only ever known a life of NF as I was diagnosed at 14 months. My mother has also been diagnosed with NF1.
When Tom was around 6 months old we noticed his right pupil was considerably larger and irregular in shape compared to his left one.
William is a five-year-old NF Hero, who loves to kiss and cuddle and is a great big brother to his sister Mia.
Parents encourage their children to dream big, live large and be whoever they want to be. However, for Mum Karla, this is not her reality.
Share
