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.