Daughter takes over mum’s fundraising after rare brain illness battle

Sandra Liddell who has been treated for a rare brain stem cavernoma, with her daughter Amy.

Sandra Liddell who has been treated for a rare brain stem cavernoma, with her daughter Amy. - Credit: Nick Butcher

A woman treated for a rare brain stem cavernoma has described the two-year battle to get a diagnosis and her determination to raise awareness of the condition which can have a devastating effect on the life of sufferers and their families.

Sandra Liddell, from Henstead, saw numerous doctors after suffering from symptoms including pressure in her head, changes in her hearing and sickness before being finally diagnosed at Addenbrooke's Hospital in Cambridge earlier this year.

The Beccles and Bungay Journal reported in the summer how the 52-year-old received a lot of support from the Cavernoma Alliance UK charity and how she had started fundraising for the cause and was hoping to set up a local support group.

But just days later, her cyst began to bleed, one of the risks of the cavernoma, and Mrs Liddell was taken by ambulance to the James Paget Hospital in Gorleston, before being transferred to University College London Hospital for Neurology where, once the bleeding had stopped, the cyst was removed.

The former beautician is now recovering at home and is as determined as ever to raise awareness of the condition.

And daughter, Amy Liddell-Andrews has taken over her fundraising efforts for the time being and has organised a Christmas fair to raise funds for the Cavernoma Alliance next weekend.

After the initial diagnosis, doctors had taken a wait-and-watch approach since the cavernoma had not changed between scans.

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But Mrs Liddell recalled the day things changed: 'I was in the garden and I couldn't stand up - I managed to get into the house and fell in the back door - it was like a force pulling me over.

'I knew that once I started feeling sick that something wasn't right.'

Over the next two days paramedics were called to see Mrs Liddell but since her blood pressure and other tests were normal, it was initially thought she may be suffering from food poisoning.

He daughter said: 'As the paramedic was here mum's face started to drop and that worried us and dad forced the issue about the cavernoma.'

Finally, more than two weeks later, the operation to fully remove the cavernoma took place in London.

Although the operation was a success, recovery could take up to two years.

Mrs Liddell's facial muscles and balance are still affected, she can struggle to swallow and other effects of the nerves.

Her left eye is unable to close, and as result she developed an ulcer on the cornea and scarring remains.

She said: 'My mindset is still very positive - I can accept what's going on like my face, I'm not phased and I'm me and that's all that matters.

'I am all the more determined to raise awareness - I feel I have now travelled the journey of trying to find my diagnosis, had the bleed and now want to help others.

'It was so tough and hard but I just feel this has happened to me and I accept it and I have every belief I will overcome this and will get out there and raise awareness and fundraise for the alliance.

'It wasn't the fact that the condition seemed unknown it was that nobody listened. I remember crying to one doctor and just saying 'help me'.

Her daughter added: 'It's so important that people know about this so they don't have to got through it - the emotional and the physical and all that turmoil.'

The Christmas fair is taking place at Bloodmoor Community Centre in Carlton Colville next Saturday, December 12.

There will be crafts, cookie decorating for children, colouring in, games and a raffle of prizes donated.

The fair will support Cavernoma Alliance UK, which is celebrating its 10th anniversary this year.

There are still a few spaces available for anyone who would like to have a stall at the fair. Email amyliddellandrews@gmail.com for more information.

Are you taking part in a fundraising event for charity? Email lynn.crombie@archant.co.uk