Sophie Burke has a rare genetic condition called Ehlers Danlos Syndrome. There is no cure for this condition. Sophie has to cope every day with symptoms including dislocations, postural orthostatic tachycardia, spontaneous allergic reactions, digestive and bowel problems, unstable joints and extreme fatigue. A recent complication of this condition has left Sophie with no other option but to be fed via tpn through her heart. She has a Hickman Line inserted which delivers her food via tpn through her heart overnight. Sophie remains incredibly positive despite not being able to lead a normal 18 year olds life.
Family and friends are desperate to find help and a cure for Sophie, whether that be in the UK or abroad. We believe that there is help out there somewhere. We are raising money to give Sophie the chance to get the private treatment that she so needs and deserves. Once enough money has been raised Sophie will be able to see a private consultant, have the tests and the health care she is in desperate need of.
Sophie has sadly faced barriers to getting this care on the NHS. Her current medical team have been great at supplying the tpn needed to keep her alive, however we don't want to stop at this and would love to see Sophie be able to eat again and lead a much more normal life.
The tpn feed going through her heart is putting Sophie at risk every day and so this shouldn't be an option long term.
Thank you for reading Sophies story and for everyone help and support. It is very much appreciated.