Biggleswade mum who has had brain surgery four times is campaigning for more awareness of rare tumour condition

A brave Biggleswade mum who is battling a rare tumour condition is campaigning for increased awareness.

Frankie Goddard, 33, has had brain surgery four times, as well as multiple other operations, due to a little-known disease called Von Hippel-Lindau (VHL). The condition causes tumours that can be benign or cancerous – meaning sufferers face unpleasant symptoms, surgeries, and 'scan-xiety' – the fear of what the next check-up could discover.

With VHL awareness month in May, Frankie is determined to encourage fundraising.

She told the Chronicle: "VHL has a huge impact, not only on yourself, but on your family and friends. You go through things that you never ever want other people to see, but you try and keep positive outlook and don't let VHL define you."

Frankie was first diagnosed as a teenager, when at 15 she experienced headaches, nausea, tunnel vision and black spots. Dismissed as a viral infection by doctors, it was an optician who spotted a swelling at the back of her eyes, and Frankie was hurried to Addenbrooke's Hospital.

An MRI scan showed that she had a brain tumour, and Frankie was operated on within a day or two, while a blood test confirmed she had VHL.

Frankie remembers: "I was quite young and I don't really think at the time I took on board the impact it would have on my life – unfortunately there is no cure."

Frankie explained that VHL is hereditary, and although neither of her parents have the condition, there was a risk it could be passed to her future children. When starting a family, the brave mum-to-be underwent IVF treatment, which showed that – mercifully – her embryo didn't have the disease.

Now a proud mummy to one-year-old Matthew, Frankie said: "It was amazing. We had one fertilised egg grow to the embryo stage – and it was negative!

"Matthew is my number one priority, and I have to make sure he is OK. He's such a smiley, happy, baby – when he smiles, everything melts away."

Frankie has had a rough ride over the years, with three more brain tumours removed – one when she was 18, one in 2017, and one only a few weeks after giving birth. Meanwhile, she has also undergone surgery to remove an adrenal gland and treatment for pancreas cysts.

The family faced another scare in 2017, when Frankie's husband, Dean, now 35, was diagnosed with a brain tumour and faced radiotherapy to stop it growing. It is still under surveillance.

Frankie said: "It brought us closer as a couple; we understood a little more about what each other was going through."

Meanwhile, brave Frankie still has cysts in her brain, kidneys, pancreas, and spine, and is awaiting tests to see if the kidney cysts are cancerous.

Summing up Frankie's outlook on life, her father, Paul Bryant, stated: "VHL isn't what defines Francesca, what defines Francesca is her attitude and enthusiasm, the way she campaigns to raise funds and awareness."

Frankie is hoping that schools or workplaces could hold a 'Wear it Blue' fundraising day during May – as navy and turquoise are the charity colours for VHL UK/Ireland.

Find out more at the VHL UK/Ireland website.