Woman set for crucial surgery after £20,000 target reached

Sophie Burke, 18, of Swaffham, who has a rare condition and her family hope to fundraise to get her

Sophie Burke, from Swaffham, could now be set for life-changing surgery - Credit: Denise Bradley

A young woman who suffers from a rare genetic condition is set for crucial surgery after a £20,000 fundraising goal was reached. 

Sophie Burke, from Swaffham, was born with Ehlers-Danlos syndrome - a group of inherited disorders that affect connective tissue within the body.

Complications have left the 23-year-old with severe gastroparesis, meaning she is unable to eat or drink and has to be artificially nourished through a 'Hickman line' going directly to her heart. 

While there is no treatment for this, an ambitious mission has been taking place to fund an operation which would see Miss Burke receive a stomach pacemaker - helping the muscles in her stomach to function normally.  

And now, courtesy of a hugely successful fundraiser led by family friends Jon and Sophie Jaffrey, which raised £9,500, the goal has thankfully been met. 

"Before Covid we'd done some fundraisers before, and we said we'd like to do this one for Sophie," said Mr Jaffrey who, alongside his wife, organised a casino, raffle, auction and stand-up comedy night at Swaffham Assembly Rooms last month. 

Sophie Burke (middle) pictured with Jon and Sophie Jaffrey at Swaffham Assembly Rooms

Sophie Burke (middle) pictured with Jon and Sophie Jaffrey at Swaffham Assembly Rooms - Credit: Courtesy of Jon Jaffrey

"We thought we might make two or three thousand, but we absolutely smashed that.

"Sophie has struggled a bit recently because she got Covid and then sepsis, so she has been in and out of hospital. It was great for her to see everybody coming together in support."

Fitting a stomach pacemaker could allow Miss Burke to eat and drink normally again, a truly life-changing development in her battle against illness. 

It would, however, require a battery change every 10 years, costing another £20,000 each time - meaning Mr and Mrs Jaffrey's work is far from over.

Sophie Burke pictured with her mum, Jo, and grandmother, Heather Bangay, at Swaffham Assembly Rooms

Sophie Burke pictured with her mum, Jo, and grandmother, Heather Bangay, at Swaffham Assembly Rooms - Credit: Courtesy of Jon Jaffrey

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They plan on hosting annual fundraisers, starting with a Las Vegas-style casino night next April. 

"We recognise it is not the easiest time for anyone, but we want to support local people like Sophie as much as possible.," added Mr Jaffrey. 

"Sophie is so strong - we always say that about her. It is very difficult for her, but she is not one to mope around and just wants to get on with her life."

The next fundraiser will be on April 1, 2023 at Swaffham Assembly Rooms. For tickets, send a message via Facebook at fb.me/e/1xDg7GYmx.