My daughter Ellie is 19 she was a normal, happy, healthy girl (as you can see from the picture above) until the age of 16 when she began experiencing gastrointestinal symptoms. At 17 she was diagnosed with intestinal failure, the rarest form of organ failure, caused by gastroparesis and intestinal dysmotility. What does that mean? It means Ellie has not been able to eat or drink since late 2017. When she was first diagnosed she was put on nutritional support via a feeding tube into her intestines. But tube feeding failed as she continued to lose weight. Her weight dropped to a point where she was unable to move or walk properly, she could barely speak and was having hallucinations. We knew she was slipping away from us. In march 2018 she was put on parental nutrition - a rare type of nutritional support that bypasses the gastrointestinal tract entirely and is administered into a central vein by a line going into her heart. This is keeping her alive - but has very high risks including liver/kidney failure...It is the last resort.

Right now, Ellie is bed bound and despite not being able to eat or drink for the past 18 months, vomits 30+ times per day. She is in constant pain and we feel that our daughters life is slipping away before us. She is supported by the specialist nutritional team at St Mark, who were the ones who saved her life last year after she lost so much weight and was severely malnourished. There is no cure to Ellie's condition but for the past year her team has tried every available medication to manage her symptoms with no luck. She spent almost a whole year in hospital and soon after being discharged she was admitted into our local hospice and was there for her 19th birthday - Nobody, especially someone so young, should have to suffer like she has. It has been heartbreaking for us as a family to see what has happened to our once healthy little girl.

We have been researching ourselves to find out why this has happened as no one has ever been able to explain this to us. We heard about vascular compressions, which had very similar symptoms to Ellie's. In desperation, we booked to see one of the only specialists in the UK who understands and has experience with these conditions. After several tests he confirmed Ellie has compressed arteries, the superior mesenteric artery, which compresses the duodenum, and compression of the left renal vein (known as Nutcracker syndrome). These conditions are very rare - and are often not considered when young girls present with gastro problems like Ellie. We are now waiting for surgery to bypass the duodenum (Gastrojejunostomy surgery), in the hope that it will give her some relief from the pain, vomiting and nausea. They will also operate on the left renal vein compression at the same time.

We are having to fund this privately as there is only one surgeon in the UK who can treat this and his NHS waiting list is such that we would be waiting months or years. We simply cannot do this to our daughter as she has already missed so much of her life. She missed out on 6th form, uni and all that being a teenager means. She has suffered so much and we are desperate to try and get her some help. The operation is likely to cost about £20,000 and we have already spent £10,000 to get to this point and have ended up in significant debt. It will be worth every single penny if she gets some quality of life - but as ordinary working parents its not easy to find this kind of money at short notice.

We know people have all kinds of circumstances but we would appreciate whatever you can give, no matter how small. Thank you.