b'Dan ClareI know I dont look like theres anything specialMy Mum first noticed my caf-au-lait marks when I was a baby about me, but I was born with a rare disease calledbut her concerns were brushed off by medical professionals. Neurofibromatosis type 1 (NF1). NF1 is a geneticThirty years ago even fewer professionals really knew about condition. It can be passed down from parent toneurofibromatosis. It wasnt until my 3-year check that a doctor child, or, as in my case, it can be a spontaneouspicked up on the way I walked (turning my feet inwards) and genetic mutation. NF1 causes tumours to growmy caf-au-lait marks, that I was referred and diagnosed. I along nerve routes. Some people will have lots,went through school, college and university with very little other will have very few. They can grow internally orsupport. Looking back now I should have had a lot more help, externally. My tumour grew internally on my opticincluding assessments for learning difficulties and ASD/ADHD. nerve. I underwent 18 months of chemotherapy,Despite that I achieved good grades at GCSE and A Level, I which so far has stopped my tumour from growing.went on to qualify as a childrens nurse and worked in the NF1 can also cause learning difficulties, autism andNHS on NICU and PICU for 17 years. I have a facial plexiform ADHD, all of which I have. tumour for which Ive had multiple surgeries but I dont let NF1 hold me back. AlfredOur son, Alfred, was diagnosed at around 18 months after more than a year of medical professionals suggesting (or discounting) NF1 as a possible underlying condition. Alfred also has glaucoma, which was confirmed when he was just 3 weeks old and he had four operations in his first year of life to save his sight. It is down to his eye consultants tenacity that we saw several different doctors and eventually a geneticist. The jigsaw of different medical views suggested that NF1 wasnt likely but the genetic tests showed otherwise.No-one else in the family has NF1 and his condition is down to a spontaneous mutation. Alfred has a plexiform neurofibroma that is growing around his right eye. Hes had two operations to debulk the tumour but each time it has grown back and a third operation is due soon. Thankfully, other symptoms are mild at the moment. He has just a few small caf-au-lait patches and no other associated problems. However, we live in constant fear that this could change at any moment. Finding Childhood Tumour Trust has given us a sense of family and perspective. Alfreds been able to meet other children with NF1, and joins in lots of activities that are accessible and inclusive, while parents can share their concerns or experiences knowing others will understand. Its changed our journey and has helped us through some difficult times.CHTT2204 CTT Booklet A5_v5.indd 18 20/09/2022 16:19'