My Sister (Grace Barley) and I will be completing a sponsored run from Dereham to Swaffham on the 7th November (Postponed due to the proceeding lockdown, we will be completeing this as soon as lockdown is lifted; with a new date!) to raise awareness around Ehlers-Danlos syndrome and to raise money for our incredible friend Sophie. We would be incredibly grateful if you could donate and sponsor us below to raise as much money as possible for this amazing person.

Sophie's Story

Sophie is an amazing, positive and inspirational 21 year old girl.

Sophie has a genetic condition called Ehlers Danlos Syndrome. She has had a very tough few years, having had numerous life threatening complications associated with this condition. These complication have led to Sophie having to be artificially fed and hydrated via a central line going directly to her heart. This requires Sophie to be connected for 12-14 hours a day, 7 days a week. A strict protocol has to be carried out everytime Sophie is connected and disconnected to maintain a completely sterile environment, and reduce any infection risks.

Sophie has severe Gastroparesis, which means that her stomach is paralysed and unable to empty normally. There is no cure for this disease. However, there are some treatments that could help. One of these options is a stomach pacemaker, which would help the muscles in Sophie's stomach to function normally. As we understand it, there is a 50-70% chance of the operation being successful, and it has been indicated that Sophie could be a candidate for this surgery. Unfortunately, the treatment is not available on the NHS in England, and currently costs £20,000, which we will have to fund ourselves. This operation could give Sophie the possibility of being able to eat and drink again, which would be life changing and truly amazing. It would also allow her to become more stable, as she wouldn't be so reliant on the invasive treatments that currently keep her alive. It would ultimately allow her to gain some of her life back. She has so much to live for and enjoy, which has recently become a huge struggle.

We are therefore trying to fundraise, and praying that the kindness and generosity of others will allow Sophie to have this treatment. If at any point it is decided that Sophie is unable to be a candidate for the surgery, the money will be available to continue with the next avenue of medical treatment.

Despite Sophie's challenges, she remains a positive, happy and truly inspirational young lady. When life allows, Sophie loves photography and making memories with her friends and family. She so deserves the chance to try this treatment and gain some control of this complication of her Ehlers Danlos Syndrome, which will ultimately lead to a safer and more stable future, and the ability to enjoy her life again.

Thank you for taking the time to read Sophie's story, and thank you in advance for your kind donations and support.