Burton teen with rare condition that causes ‘droopy tumours’ determined to find love and have family
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A Burton teenager who has endured more than 100 operations as a result of a rare and incurable genetic condition is determined to find love and have children. Lizzy Bull’s condition and left her blind and causes massive, “droopy” tumours to grow around her body, which have disfigured her face and one of which recently turned cancerous.
However, there is no holding the brave 18-year-old back who says she wants to fall in love and has even had her eggs harvested in case her gruelling chemotherapy treatment leaves her infertile. She is now faced with losing her losing her long, glossy hair because of chemotherapy, but this remarkable young woman has simply enthused about the “bright pink wig” she hopes to have.
Lizzy, who lives in Burton, with her parents Nicola, 40, a full-time mum and Gavin, 44, a car manufacturer, and brothers Matthew, 19, and William, 10 – who she nicknames collectively The Addams Family after the eccentric TV clan “because they are so odd” – said: “I want my own house, my own job, my own family.
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“I want to fall in love. I want everything anyone else has. It seems clichéd but it’s what most of us want.” She 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 that she was diagnosed with neurofibromatosis type 1 (NF), a genetic condition which she was born with and affects 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. It was a massive blow to her dad, Gavin, who had also been diagnosed with NF aged four, but like Nicola had not been concerned as he had 20-odd pea-sized benign tumours on his right arm, but was otherwise unaffected and had no idea how severe the condition could be.
But, as with her failing sight – which was the main issue in her early years – 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 am obsessed with my iPad and so many things are becoming more and more accessible for blind people.” Lizzy’s formal diagnosis of NF came when five benign tumours appeared on her face, back, and foot when she was seven and, unlike her dad, who never had any issues because of the condition, it was the start of a very difficult journey for her.
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. This involves a fine needle being placed inside the whites of the eye to release the pressure and improve fluid drainage, to prevent further damage and preserve her remaining sight, as she can still see faint shapes and colours. Having 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 also has five NF tumours. One is on the back of the neck, one is near her right eye socket, there are two tiny tumours on her left palm and under her left foot, while a tumour on her right cheek was found to be cancerous in March 2022. She 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.
Always open and honest about her condition, she has never been bullied and even made videos which were shown to teachers and classmates at school explaining what NF is and how it affects her – after which she welcomed their questions. She has been helped by a teaching assistant from preschool through to sixth form and was determined not to fall behind her peers – going on to complete her GCSEs and obtain BTEC qualifications, while she now hopes to qualify as a young people’s counsellor.
Lizzy, whose brother Matthew has cerebral palsy – a condition caused by a problem in the brain which in his case means he has learning difficulties, struggles to move his left side and has epilepsy which causes seizures – said: “I absolutely loved going to school, being around my friends, and studying.
“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.” With less than five per cent of NF tumours turning cancerous, according to the Mayo Clinic, 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.
She said: “I have always wanted children. I absolutely love children. I want to have the chance to do that in the future. I don’t want to pass on the NF, but thankfully we can tests the eggs and screen them beforehand.”
In the immediate future, she has big plans to visit Disney World in the USA with her family after finishing her studies, once her cancer treatment is complete. She said: “I want a long and full life.
“I want to go to Disney World in America. I want to do so many things with my life.” While her early years were tough, as the family was thrown into the “great unknown,” Lizzy’s mum Nicola could not be prouder of the young woman she has become.
Nicola – whose youngest son is in perfect health – said: “Lizzy’s childhood was quite traumatic because, as parents, you never expect any of this and you just want to make sure your children are safe. I was so worried about how people would perceive her. I think people will always make a judgement about her because of how she looks.”
She added: “But as soon as they hear her speak, it changes everything because she has such an incredible personality. She works extremely hard. I can’t say enough wonderful things about her. We are just so proud.”
The family are now fundraising using GoFundMe to raise £15K to help Lizzy buy her pink wig and to help with costs, as they have had to move to London for six weeks for her cancer treatment. Meanwhile, Lizzy is hoping for another occasion when she can wear her beautiful prom dress.
She said: “The ball was amazing, I got to dress up and see all my friends and forget about all the operations, the treatments, and the chemo. I can be flirty if I want to be and I felt beautiful and confident. It was great.”
A spokesperson from Nerve Tumours UK said: “NF1 varies widely in how it affects those who have the condition. Many people with the disorder will be affected very mildly and may have nothing more than skin changes.
“A minority of people (around a third) who have NF1 will have medical problems related to the disorder at some time in their life. Some of these problems will be mild and easily treatable and others will be more severe.” They added: “Everyone, whether they have NF1 or not, has a risk of developing cancer during their lifetime. It is known that a small number of individuals with NF1 will develop malignant (cancerous) tumours.
“However, the lifetime risk of someone developing cancer related to NF1 is around 10%. Research in this area is continually being updated.” Donate to Lizzy’s GoFundMe here.
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