A Tynedale pupil is raising awareness about an uncurable condition she was diagnosed with since she was a child.

Bethany Tully, 18, has been suffering with Neurofibromatosis Type 1 since she was eight years old.

Since then, she has wanted to help raise money and attention to those who are currently helping children and teens with the condition.

The Ponteland High School sixth form student has so far raised over £7000 for Childhood Tumour Trust (CTT). The charity brings Neurofibromatosis Type 1 families together and provide opportunities for children and young people as well as funding research.

"Bethany is a fighter and has never let her NF1 get in the way of things that she has wanted to do," Mum Joanne explains.

"She is so enthusiastic about fundraising and raising awareness of the condition she lives with every day.

"To date she has held prize bingos, coffee mornings, several fun runs, walks and throughout her school when she attended Bellingham Middle School.

"She is currently in last year in sixth form at Ponteland High and she has held book sales, cake sales and jar for change collections.

"She is always looking for ideas and ways in which she can help those with NF1. NF1 is like a jigsaw puzzle with one piece missing that we still need to find.

"Bethany is also a member of the CTT Youth Advisory Group and is hoping to go back to the CTT annual NF1 activity camp as a volunteer in 2025. She likes to help and support the younger NF warriors who are just starting to learn a bit more about their NF as they come into their teenage years.

"Doctors call it a spontaneous mutation as Neurofibromatosis (NF) as it is a genetic condition that causes tumours to grow along the nerves throughout the body, including the brain and spine.

"On the outside these look like lumpy bumps on the skin and can be very sore a lot of the time, on the inside it just looks very messy.

"Bethany also has autism, hypo mobility and ADHD as a result of her NF1. NF is progressive, unpredictable, and currently there is no cure. When she was diagnosed when she was eight years old it was by sheer luck.

"We discovered a lump above her right eye when she was two and the GP referred us to a dermatologist, and we were told it was just a fatty lump.

"Roughly three years later more and more lumps started to appear on her scalp and back. "At that time, we were told they were just birth marks after speaking with her health visitor, but the consultant then told us that they thought it may be NF.

"Bethany then went into hospital for a MRI and to also have a lump, which were tumours, removed off her back for a biopsy which later confirmed a complex form of NF with multiple plexiform around her spine and inside her neck. 

"She is now currently taking a new chemo drug which has recently been approved by NICE to help with her pain, but this has caused her hair to fall out, rashes on the skin and lots of nasty infections.

"Early diagnosis is paramount, that’s why raising awareness of this horrible, unpredictable, incurable condition is vitally important.

"It's important that we raise awareness of NF1, we had never heard of it and a lot of medical staff don't know about it."