Hope for Emily

Hi my name is Karen. This story is about my daughter Emily. She is now 16. She suffers from a condition called Ehlers Danlos Syndrome(EDS). You may not have heard of this condition, it is rare, life threatening and very disabling. Emily has been affected by this for 5 years, she has lost out on the whole of her high school education because she has been so poorly and is now a wheelchair user. Life has been really hard for Emily but last year things became extremely difficult for her. Emilys joints all dislocate and her jaw started dislocating too, doctors tried everything. They tried arch bars to stop the jaw dislocating. Emily started to have swallowing problems and was seen by the salt team, they had videos of her swallowing and was told it was unsafe, Emily was then not allowed to eat or drink and had to have a ng tube fitted. Emily carried on having problems with her jaw and went on to have about 17 operations in 12 months. Unfortunately all these operations failed. One of her operations was a bone graft from her hip to put in her jaw to stop it dislocating but again still had problems, her jaw fused resulting in the operation being reversed leaving Emilys jaw to dislocate again. Emily was constantly in ICU/HDU critical care because she constantly had pneumonia. Emily then developed problems with her tummy and ended up having 7 operations. One of them was fundoplication and a gastreostomy this also came with lots of problems, Emily then had lots of problems with her bowel and everything is still on going and still with lots of problems. Emily run into more problems, her jaw was still dislocating but her mucles were a big worry as Emily had then developed paradoxical cord movement. Emilys voice box wasn't working properly it was closing when it should be open and vice versa. The second time this happened in hospital we almost lost Emily, I was told to get the family to the hospital as they didn't think they were going to save Emily, this ended with Emily relying on a tracheostomy which was the only way to keep Emily safe and get her home after being in Manchester childrens hospital for a whole year. She finally came home last December just before Christmas. Emilys condition is still deteriorating and the NHS have nothing more they can do. We have been eveywere, London, seen lots of different doctors. The only option we have left is to go private. The only doctor that showed any hope for Emily is her old doctor but he has now retired from the NHS, he runs a private practice in Manchester, he is our only chance to get any more help for Emily and any hope of losing the tracheostomy, if he cannot help with the muscle in her jaw she may lose it. We need to try everything we can. I have 4 children with this terrible condition, my other daughter now is suffering with the same problem with her jaw. Me and my husband are all our children have, we are their carers 24/7 and rely on benefits so can't fund this ourselves. So I'm hoping to raise money this way. Please find it in your heart to help our daughter, every little helps. Thank you so much for taking your time to read this xx