Proudly posing in a classy purple prom dress before her end-of-year sixth form ball, Lizzy Bull felt “beautiful and confident”. She spent the night sharing her hopes and dreams with her friends like any other 18-year-old girl.
But, unlike her classmates, she is blind and has endured more than 100 operations as a result of a rare and incurable genetic condition causing “droopy” tumours to grow around her body and disfigure her face. One of the tumours has recently turned cancerous.
Yet, there is no holding this remarkable young woman back. Faced with losing her long, glossy hair because of chemotherapy, she is simply excited about the “bright pink wig” she hopes to have.
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Lizzy, who lives in Burton-on-Trent, Staffordshire, with her parents Nicola, 40, a full-time mum and Gavin, 44, a car manufacturer, and two brothers, said: “I want my own house, my own job, my own family.
“I want to fall in love. I want everything anyone else has. It seems clichéd but it’s what most of us want.”
The inspiring teenager added: “I have never looked at myself in a negative way. I have tough days, but I just put on my big girl pants and get on with it.
“This is how I am and if people don’t like it, they can jog on. I won’t change for anybody.”
A fighter from the day she was born, according to her parents, Lizzy showed this incredible spirit from the moment they first held her and realised her eyelids were turned out.
A week later, she went under the knife and was diagnosed with glaucoma – a condition where the optic nerve is damaged – while they were told she would probably end up blind, which she did before turning two.
But it was not until she was seven - when five tumours appeared across her body - that she was diagnosed with neurofibromatosis type 1 (NF), a genetic condition which she was born with affecting nerve tissue growth, causing tumours to develop around the body.
According to Nerve Tumours UK, there are approximately 25,000 people in the UK diagnosed with type 1 NF.
Lizzy took her diagnosis in her stride and refused to let it hold her back. She learned Braille in her reception class, alongside developing language skills, and now uses apps on her iPad to provide audio descriptions, as well as a Braille sensory keyboard which allows her to read and study.
She said: “I have gone through really busy periods with lots of surgery when it’s gone crazy and just kicked off. It’s been a bit of a rollercoaster. But I’m very grateful to my family, who have always been so supportive.”
Endless operations followed over the years. Most involved debulking surgery to remove tumours or needling to improve her vision.
She also had an operation in 2018 to replace her right eye socket with titanium, as one of the tumours was pushing her eye – nearly causing it to pop out – she then had a matching procedure on her left socket in 2019.
Lizzy has virtually no vision, painful and itchy skin because of her NF and needs a cane to walk, yet she is full of hope and enthusiasm and has secured herself a place to study further at a college for the blind after completing her school exams.
“I absolutely loved going to school, being around my friends, and studying," said Lizzy. “It was something I always looked forward to.
“I never even thought about bullying. I just wanted to make friends.
“I was a very sociable person. I am always talking to someone, even if it’s to myself!”
She added: “My education was really important to me and I’m quite proud that I passed maths, as that is quite a visual subject, which was very difficult.
“And I hope to become a child counsellor or therapist to help people. Especially children and teenagers who are insecure about themselves, and I want them to know they are beautiful just the way they are.
“You should never change yourself to make someone else happy.”
Lizzy’s biggest health challenge came in March 2022 when a tumour on the right side of her jaw, which had grown to the size of a tennis ball, was found to be synovial sarcoma, a cancer in the soft tissue.
Surgery to remove it followed on March 11 at London’s famous Great Ormond Street Hospital and she is now having chemotherapy and proton beam therapy, which will mean she loses her hair.
She said: “The cancerous tumour was a big inconvenience, as it affected my hearing. I was really worried I was going to die.
“But now I’m looking forward to getting a bright pink wig, as I have always wanted to colour my hair but couldn’t at school.”
As long as Lizzy’s cancer does not return, she has been given a normal life expectancy. And she will not let it damage her chances of having children.
She has already had her eggs removed and she will be able to screen them to check if they carry the mutated gene to make sure she does not pass it on. “I have always wanted children. I absolutely love children. I want to have the chance to do that in the future," explained Lizzy.
The family have started a GoFundMe to raise £15K to help Lizzy with costs, as they have had to move to London for six weeks for her cancer treatment.
To donate to Lizzy’s GoFundMe visit here
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