‘She’s an inspiration’ - Siblings plan 13-mile run to raise money for ill friend

Sophie Burke, 21, is hoping to raise £20,000 for life-changing surgery. Picture: submitted.

Sophie Burke, 21, is hoping to raise £20,000 for life-changing surgery. Picture: submitted. - Credit: Jo Burke

A brother and sister are planning to run 13 miles through Norfolk to raise surgery funds for their “incredible” friend, who has faced life-threatening complications due to a genetic disorder.

Grace Barley, 23, will be running 13 miles from Dereham to Swaffham to help raise funds for Sophie.

Grace Barley, 23, will be running 13 miles from Dereham to Swaffham to help raise funds for Sophie. Picture: submitted. - Credit: Grace Barley

Sophie Burke, 21, suffers from Ehlers-Danlos Syndrome, a rare illness which affects her connective tissue. Complications have left her with severe gastroparesis, meaning she is unable to eat or drink, and has to be nourished through a ‘Hickman line’ for 12-14 hours through the night.

The “always bubbly” young woman, who lives in Swaffham, is now being helped by family and friends to raise £20,000 to have a “stomach pacemaker” fitted. The operation is not yet offered on the NHS, and is thought to have a 50-70% success rate.

“We believe that the success rate is actually quite high,” said Sophie’s mother, Jo. “When you’re stuck with not being able to eat, to be given that percentage is quite positive.”

Ms Burke said that Sophie had come to the decision herself, and wanted to enjoy normal life as a 21-year-old.

Grace will be joined in the run by her brother, Ethan, 19. Picture: submitted.

Grace will be joined in the run by her brother, Ethan, 19. Picture: submitted. - Credit: Ethan Barley


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“She’s just such an inspirational daughter,” said Ms Burke. “I’m so proud of her determination to find something that will enable her to eat again.”

Many of Sophie’s friends are now fundraising, with one selling cakes and another doing a 24-hour sponsored gaming livestream. In an effort of her own, Sophie sells handmade crafts from her Facebook page, Sophie’s Craft Creations.

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Friends of the family Grace and Ethan Barley are running from Dereham to Swaffham to contribute to the fund, and have so far raised £900 on their JustGiving page. The siblings hope to run on the first weekend after lockdown.

“Raising anything would be amazing,” said Ms Barley. “she’s such an amazing person: always bubbly, always positive. No matter how many times she goes into hospital, she’s still smiling, still asking how everybody else is, never moaning.”

Ms Barley, 23, works as a physio assistant in the same hospital that Sophie has had to frequently visit this year, and said that with the lack of visitors allowed due to coronavirus, she was glad to be able to see her.

Ms Barley added that she was practising her running and was braced for the challenge.

“I’m slowly getting there,” she said, “and hopefully I’ll have a bit more stamina by the time we do the run - it’s kind of a personal goal as well!”

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