William was born a few days past his due date, and was a sweet happy boy. At about 4 months he started developing cafÃ© au lait spots, a tell tale sign of NF1. His development was not quite as delayed as his sisters, who also has the condition, but it was still enough to warrant some intervention from occupational and physiotherapists.
William is a still a sweet helpful boy, but over the years, has struggled with his emotions, getting particularly overwhelmed with a lot of noise or when things are too much emotionally. As his sister was monitored our paediatrician was able to see William also struggle with ADHD traits and asked us to get a referral for him so he could get formal diagnosis to begin monitoring. For William this means bi-annual MRI scans to monitor bone growth and changes, renal ultrasounds, and eye checks with an ophthalmologist to check for lisch nodules and tumour growth to his optic nerve. He is lucky to be in the clear so far for these, but he struggles with his working memory, his concentration at school and unfortunately, this will not be likely to change in the near future.