I want to live tumour free.
Having NF affects my learning. I have trouble writing and understanding my teachers, and I find it hard to concentrate in class. I don’t talk to anyone about having NF because I find it hard to explain. It makes me feel very lonely, which is why I want more people to know about it. That’s why I want to bring NF out of the shadows."
Age 13, living with NF1.
Jo writes about his son Joshua's challenging journey in getting a diagnosis of NF1.
My son is now 13 and his journey with NF1 has been complicated and very hard. He was born with lots of café au lait spots. He had a lot of very big ones and lots of little ones all over his mid-section.
His spots really concerned me, so I went to see many doctors. Only today do I realise that I went to see 16 doctors over the years, to get answers to what was going on with my son.
All the doctors I went to see told me not to worry and said the spots on my son’s body were Mongolian spots. However, as a dad, I knew something was wrong because he wasn’t reaching his peer milestones growing up.
One of his teachers was so concerned she asked me in for a chat over Joshua’s progress at school. She asked me to seek more medical guidance. However, when I returned to see doctors they all said the same thing, it's Mongolian spots.
This lack of understanding has affected my son from getting the support he needed early on. This has caused a lot of problems for Joshua and has harmed him immensely.
I am still deeply hurt that there is a lack of understanding about NF1 in the community.
His teachers, school staff, and doctors would accuse me of beating my son when they would see his marks. Even when I explained he had NF1 they would still say they would be reporting me to the police etc.
Just by chance, my son ended up at the Sydney Children’s Hospital in Randwick on a different medical matter and the surgeon asked me "who his NF1 doctor was. I was in shock. I knew nothing about NF1 so having to understand what that meant for my son was hard in many ways.
So, my son ended up being diagnosed with NF1 when he was about 9, the lateness of this diagnosis was very dangerous. The way NF1 has affected my son is that he has an intellectual disability. Joshua is about 3-4 years behind his peers. This has made him very behind at school and has also made him isolated because of his inability to communicate with his peers.
I am very happy with the work that the Children’s Tumour Foundation does in supporting people with NF. Their work has helped my son not feel so alone with NF1 and has been amazing in empowering him in his journey with NF1.
Joshua with Ruth Lindsay, Support Coordinator, CTF.