Community comes together to support Swaffham teenager who has a genetic condition that has left her having to be fed through her heart
PUBLISHED: 12:37 15 August 2017 | UPDATED: 15:36 15 August 2017
A community is rallying to help a teenager born with a rare condition who has to risk her life every day just to eat.
We have reported how Sophie Burke, 18, from Swaffham, has a condition called Ehlers Danlos Syndrome which has impacted nearly all aspects of her life and most recently left her having to consume food through her heart via a life-threatening procedure.
She has been told that her situation could be permanent but she is not giving up and her family is determined to raise enough money to see a specialist consultant and potentially get treatment abroad.
On Saturday, August 14, Swaffham and District Lions held a raffle draw and garden party for Sophie and announced they had raised around £700.
The extra money means that Sophie’s fund has now reached over £2,000.
Dennis Tallon of the Swaffham Lions said: “The raffle went very well, it started at Swaffham Tesco store and this raised the bulk of the money.
“Then it was taken to a few fetes and social media helped with the Lions Facebook page promoting the cause.”
The Lions are not the only ones who have come forward to help Sophie. Another charity night is set to take place in October thanks to Kim Long from Innovations Hair and Beauty.
Ms Long’s charity evening will take place at Stanley’s social club in Swaffham and when she told the venue and the entertainers about Sophie they all offered their services free of charge.
“Her story got to all of us and as I’ve done charity fundraisers before I decided to try to help,” she said.
“I have two daughters myself and this really tugged the heart strings, when I asked about using Stanley’s, owner Trudy Cutting immediately offered it for free and then the entertainers offered their services for free too. It was amazing.”
She added: “Sophie needs everyone’s support and I hope we can all join together to help her.”
While there is no cure for Sophie’s condition the teenager hopes that she will eventually be able to eat food again. Speaking of her future, her mum, Jo Burke, said: “I hope there is someone out there who knows what could help. We believe there are treatments out there and even if it is not in this country there could be options we could try in order to get her a more normal life.”