b'AustinOur son Austin is 8 years old. He was diagnosed with NF1 aged 3 after we noticed many caf-au-lait marks and freckling. The journey to diagnosis was a struggle, but was confirmed after genetic testing. No-one in the family carries the gene. Austin is hypermobile, has speech and language difficulties and some mild learning differences. He is currently classed as mild.Our stories NicoleWhen my daughter Nicole was born, her caf-au-lait marks were of living dismissed as birth marks. When she was 3 it was suggested that she had NF1 due to the caf-au-lait patches and delayed speech. Nicole was the first in the family to be diagnosed with NF1 and with NF1it has been a learning curve. She has a large plexiform wrapped around her sciatic nerve, scoliosis and ASD. Despite most of her childhood going in and out of hospital for scans, surgery and appointments, and struggling through school, she is finishing her degree in Design Engineering living independently and travelling the world. She is proud of who she is and wants to advocate for others. In her words, she can do almost anything anyone else can (just sometimes a bit differently). Learning to live with NF1 will take time, and nobody can predict the pathway ahead but the important thing as a parent/carer is to be aware of changes in the condition, who to see and when, to recognise that NF1 is part of your child and everything else will follow. CHTT2204 CTT Booklet A5_v5.indd 17 20/09/2022 16:19'