For a long time, I didn't know I had the same condition as her. Not till a nurse told me at school after reading my medical notes. When I found out I was angry and scared that mum hadn't told me herself. As I hit puberty I started developing tumours

Whilst I don't have many of the round little fribromas, I have multiple plexifribromas. These include one on my scalp, arm, and breast. The latter caused my chest to be quite disfigured. I have a number of other small ones all being monitored in case they become cancerous.

My aunt and uncle died from the condition, and my late mother spent much of her life in pain. This causes me to feel a lot of anxiety and often leaves me depressed. So little is known about NF1 so it can be extremely isolating. Which is why spreading awareness is important

#WorldNeurofibromatosisMonth

May 17 is Neurofibromatosis (NF) awareness day. NF is one of the most common genetic conditions effecting more than 2 million worldwide, it is one of the most common genetic disorders yet also one of the most unknown, it can be passed down genetically or spontaneously. It is not contagious. It is a genetic condition that causes benign tumours to form on the skin. These tumours can form anywhere from the brain, spine, leg, eye or stomach, both internal and external. There are three types of NF: NF1, NF2 and schwannomatosis Neurofibromatosis effects all those with it differently however people with nf are more likely to experience anxiety and depression, learning disabilities, bone deficiency’s, chronic pain, headaches and much more . Those with NF also are 3-5% more likely to develop cancerous tumours. There is no cure. I have NF. 

Dexter and I were invited to our first fundraising event on Friday, that was set up for Dexter by a lovely, kind and generous friend, Sarah Barker. We spent our lunchtime socialising with the wonderful staff of Integria Healthcare Australia, enjoying a sausage sizzle and some fabulous company. Integria and all the staff at the Brisbane office, showered us with kindness and generosity. 

We have been completely overwhelmed by the outpouring of support, both financial and emotional, from so many kind, and generous friends, family and strangers. There is no way that we can convey just how grateful we are to all who have donated, or shared Dexter’s story to help us get the word out about Neurofibromatosis. So we just want to say a massive THANK YOU from the bottom of our hearts, with a special “Ta” from sweet Dexter. 

Since Dex had his second MRI, both Bec and I were on edge. The appointment was moved forward but it still wasn’t soon enough. The last time we were in this position our whole world was turned upside down. What were we going to be told? Were we again going to be thrust into a position where we could only observe the ordeal our baby boy was going through…or could it even be worse?

In many ways, I have it easier than Bec. I have the escape of work. Harrison has the escape of school. Bec has no escape. Now sure, I worry about my boy all day every day. I worry about my whole family all day every day…but by the nature of work, there are times when my attention shifts momentarily away from my troubles, and I can focus 100% upon the task that is set in front of me. It gives me some respite from what is a life that is filled with a level of uncertainty that is equal parts fear and frustration. But this is not the case for Bec. She lives with NF day in and day out. She loses sleep, and struggles with her fears and anxiety every single second of every single day. She can’t take a break, because as Dexter’s mother, she does not allow herself to. She’s no martyr, and she seeks no sympathy in her life. She has accepted her responsibility and I am profoundly proud of everything she does. But for her, there is no respite.

Rebecca hardly slept between the MRI and the day we received the results. She chased down the report and was rewarded for her persistence with an early appointment with our Neurosurgeon. This is a man who told us how it was, straight down the line, and showed genuine interest in all aspects of Dexter’s care. But what did he say?

We know that Dexter’s tumours will continue to grow, unchecked, throughout his head, throat and spine. We have come to accept this. We also know that there is no treatment for this condition and that every single day brings with it something new and frightening. This is our life. So we prepared ourselves for the worst, not knowing what the worst could possibly be.

Moderate growth with no extension into new areas. No change to the ‘Unidentified Bright Objects’. Minor growth to his spinal tumours. No new tumours.

Would you believe that this news was the best news we could have ever received? The absurdity of hearing that your child’s tumours that infiltrate the entirety of the right side of his head and throat has grown a moderate amount, rather than no growth at all or the miracle that would be a reduction, is not lost upon us. We know it sounds bonkers…but we were truly happy to hear this. It was the best news we could hope for. It was news that said we were still in the grey…the area of watchfulness, but not yet at red alert. He was doing ok. He is doing ok.

And that night…Bec slept.