Dialog Box

Children's Tumour Foundation of Australia

Jess's Story

Jess's Story

My family has a history of NF and my parents knew from birth that I had inherited the NF gene. I grew up knowing I was different from other children, but I was fortunate to not have many health issues or major deformities like other NF patients. I was then raised on the Sunshine Coast with my dad, mum and younger brother who also has NF1, before moving to Perth in 2012.

Having NF didn't really affect me during my younger years. I loved arts and crafts, played the flute, sung in the choir, went to state in the Tournament of the Minds, played sports and generally thrived through my childhood.

When we first got internet in our home in the late 90s, I really started to think about my future with NF.

I remember reading about NF on the CTF website in the US, so I reached out to them as I had so many burning questions about NF. 

They promptly sent me a large parcel with lots of information about NF, the camps, etc. I remember really appreciating that an organisation would do that for a random person on the other side of the world.

After continually falling over and feeling dizzy, my mum insisted that I see a specialist to review my condition. I was scheduled to have an MRI and it was at this point that I met Dr Bruce Hall; a neurosurgeon in Brisbane.

It was Valentine’s Day, and he likened my scan to “lighting up like a christmas tree”. I had a particularly suspect tumour on the C1/C2 area of my spine that would require regular monitoring over the next few months. But that was not the only one. My body was riddled with them.

When we got home, I sat on the couch for a week feeling sorry for myself before forcing myself to get off the pitty train.

Six months passed before we discussed surgery, but it had reached a point where the tumour was causing damage and had become life-threatening. I was losing sensation and started to fall over a lot as basic cognitive and physical skills deteriorated.

I recall attending a friend’s dinner party and unwittingly started washing my plate with boiling water directly from the urn. After having my hands in the water for a good few minutes, my friend came rushing over in a panic warning me that it was boiling water. I pulled my hands out of the water...red and blistering from the boiling water. Because of the tumours, I could not feel the temperature of the boiling water correctly.

An MRI revealed that my tumour had grown significantly and looked like a doughnut on a stick that was in a tube. The tumour could not grow out as the spinal bone blocked its way so it was forced to grow inwards, squishing my spinal cord.

I was told that I had three months to live and limited chance of surviving the surgery.

I had my first major, life-saving surgery at age 22. It took 11 hours of surgery, four days in intensive care and 10 days in recovery before I was discharged from the hospital. I recovered a lot quicker than anyone thought I would, but I was determined to get out.

There was a girl in a room near me who had apparently had a similar surgery. All I could hear was her complaining about not wanting to get out of bed to do her physical therapy. That was all the motivation I needed to do the opposite. 

On my second day in the ward, I was allowed to sit up in my bed. On the third, to be assisted to the actual toilet in my room. On the fourth, I was able to have a shower. You do not know how awesome that shower was.

I then started my physio treatment. I was told it would take me a few weeks to get the ability to walk again, hold a cup or do basic things like have a shower by myself. My first day in treatment was hard, and exhausting; however, I was determined to walk as soon as I could.

On my fifth day of physio, the doctors stood shocked. What they thought would take at least take a few months had taken five days. By the seventh day in the ward, I was told I could go home.

Weeks passed and I had a follow up MRI. My spinal cord was starting to heal, but it would take months before I would be fully recovered.

Since then, I've had a couple of minor surgery's to remove neurofibromas and have yearly specialist check-ups and scans every other year.

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.

I have two degrees and a fantastic job; I am building a house with my husband, run two small businesses, travelled the world, and so much more. Nothing is going to stop me from loving and living this one life that I have been given.

Don't get me wrong, I do get days where I get incredibly down about the things that I might not have, and I also experience severe pain. However, I can manage it with massage, pain relief, stretching, yoga, meditation and prayer.

For me, handling the ups and downs that NF can throw at you emotionally and physically is about controlling your frame of mind, while also taking care of your heart, mind, and soul. It is one of the main things that will get you through this beautiful life we have!