This is Ellie's story who is 14 and lives in the Uk. When Ellie was born she was diagnosed with neurofibromatosis type 1 ( NF1 for short) which runs in her dad's side of the family, her dad has it, her auntie, grandma and so on. When Ellie was 4 years old she started primary school, although she was a bit behind due to having nf1 as that can cause learning difficulties she loved school. Near the end of October she started to suffer from headaches and sickness, we thought maybe she needed glasses with just starting school.

We did take her to the docs after a few days suffering and they diagnosed her with a virus. We also noticed that her forehead was swollen we wasn't sure if she had bumped her head and not told us. On the 30th October she had a yearly eye appointment at Manchester eye hospital, we was going to cancel it due to her not being well but my mum advised us to still go and make sure all was ok.

We got there and they started doing their tests like usually, when one eye specialist then said I would like to go and get someone else in to check things over, she had to have photos taken of the back of her eyes then we went back in to the doctors room to talk. They told us that she had pressure behind both eyes and that she would need an emergency mri scan. But because she had eaten we had to wait a few hours.

Around 8pm she went down for her mri, a few hours later a doctor came to talk to us and said she had a condition called hydrocephalus and that there was a blockage causing the pressure behind her eyes and said that she would need an emergency brain surgery, they did an Etv procedure the next day and touch would 10 years later she’s been fine. Still gets headaches but other than that. Here's to the next 10 years.