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Swaffham family's appeal as treatment not available through NHS

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The mother of a 21-year-old has hailed a “phenomenal” response as the family appeal for life-changing treatment support.

Sophie Burke, of Swaffham, has a genetic condition called Ehlers Danlos syndrome which means she has to be artificially fed and hydrated via a central line going directly to her heart.

She is hooked up to the line for 12-14 hours every night, seven-days-a-week having been diagnosed in 2015.

Sophie Burke, of Swaffham, has a genetic condition called Ehlers Danlos Syndrome. Picture: SUBMITTED
Sophie Burke, of Swaffham, has a genetic condition called Ehlers Danlos Syndrome. Picture: SUBMITTED

The 21-year-old has severe Gastroparesis, which means her stomach is paralysed and unable to empty normally.

In response to the family appealing for private treatment which is not available through NHS England, friends have rallied together for the cause.

The treatment would give Sophie the possibility of being able to eat and drink again, as well as being less reliant on the invasive treatments currently keeping her alive. It would cost the family around £20,000.

Sophie Burke with her boyfriend Rowan. Picture: SUBMITTED
Sophie Burke with her boyfriend Rowan. Picture: SUBMITTED

Ethan Barley, a friend of Sophie’s younger brother, will be completing a sponsored run from Dereham to Swaffham on November 7 with his sister Grace for the cause.

Sophie’s mother Jo said: “She is an incredibly positive person and desperately wants to get back to some normal life to be able to enjoy things.

“A friend set up a Just Giving page last week and the response has been amazing. It’s so touching that so many young people want to get behind Sophie whether they are friends of friends or have heard about it. For us as a family to have that support is fantastic really.”

Despite having a very tough few years, Sophie is determined to enjoy life. She is a keen photographer and has aspirations of studying law at university. Her boyfriend Rowan is currently studying through the Open University.

She herself was offered unconditional places to go to university at 18 but had to turn them down because she was too unwell.

And the former College of West Anglia student has been creating her own crafts as Christmas presents to raise extra funds for her treatment.

Despite feeling very poorly, she has been motivated to set up her own Facebook page called ‘Sophie’s Craft Creations’ where the gifts can be found.

Jo added: “She wants to do something herself and she has never been a person who sits back and expects everyone else to do everything, even though she is unwell.

“I have told Sophie that even if she comes up as not being a candidate for treatment, we will just keep searching even if it’s abroad.

“I want to see her eat again and be more stable so she can enjoy life more than constant hospital appointments. To be hooked up every night at the age of 21 is not a nice thing to do.

“She has been really quite poorly from it and has been getting infections in her body.”

It was only when Sophie was diagnosed that her mother and brother also found out they also had the same genetic condition. It affects them very differently to Sophie however.

Jo said: “I have had different health issues throughout my life but I never knew I had this condition so it was a surprise.”

The fundraising page can be found at www.justgiving.com/crowdfunding/sophiestreamentfund , while Ethan and Grave’s sponsored run is at www.justgiving.com/crowdfunding/sophiestreatmentfundraiser.

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