Gabriella White, age 11, discusses her NF1

"I was diagnosed with NF1 at age 3, so essentially I’ve always known I have had it.

I know how hard it is to live with NF,  with all the MRI scans and other medical appointments I have, which means I have to take a lot of time out of school.  Luckily all the teachers are supportive and my friends are especially lovely – but there are lots of other downsides to having NF.  I’ve tried so hard but I just can’t ride a bike. I also have a brain tumour which blocks my hypothalamus gland so I’m always hungry as nothing controls my appetite.  I know I am overweight and this makes me upset.  Also, my tumour blocks my pituitary gland so I have to have regular injections to stop me having early puberty (though they are ending soon!).    This may sound odd but I find it cool that I’m the only girl in my school with freckles under my arms!

Recently I did a speech on NF to present to my house.  It was essentially a competition to choose the charity we would support and I won!  So now the house charity at school is Nerve Tumours UK!

I think its important to be kind and have courage and I always try to do both every day of my life."

By Gabriella White, aged 11