Gastroparesis treatment for Kira.

Kira Roberts, my wonderful daughter was thriving at life, and living it to the best until December 2020 when she fell into a canal whilst rowing for the University of Lincoln and became very ill. This resulted in her first (of many) hospital admissions and was diagnosed with an Epstein-Barr virus, viral Hepatitis and and an enlarged spleen. Luckily, she was able to come home just before Christmas and believed she would make a full recovery, however sadly this wasn’t the case.

Two days after boxing day, Kira started to go downhill again and suffered from severe nausea and vomited everything she tried to eat and drink. She proceeded to spend the next 9 weeks (including NYE and her birthday) in hospital suffering with extreme nausea, severe abdominal pain, vomiting, bloating and lost all energy to function, where she lost over two and a half stone in 2 months which subsequently caused problems on top of everything else.

Most doctors told her it was in her head and refused to do any tests and as you can imagine Kira was petrified of how ill she was becoming and everyday was a battle to make the doctors believe her, this massively affected both her physical and mental health.

After numerous complaints to the hospital, tests were done but most were inconclusive, and Kira was finally given a naso-jejunal feeding tube, which bypasses her stomach and goes into the small intestine, and she has been tube fed ever since. When she is well enough, she comes home with the feeding tube, however she spends a lot of days in the house as she is crippled with nausea and pain, with no energy to do anything and as you can imagine it has broken all her loved ones hearts seeing her like this. There has been multiple long stay hospital admissions and she was no closer to an actual diagnosis. Kira has seen things in hospital that no one wants to see and whilst struggling day after day, she still continues to fight and has incredible strength.

As a last resort, we made the decision to go down to London to see a highly experienced gastrologist consultant who listened to Kira, looked at all her tests and notes and most importantly believed her which meant the world to us all after spending months and months being told it was a psychological problem. This was such a positive and emotional day for us all. Kira has been diagnosed with Ehlers-Danlos syndrome which is a hereditary disorder that affects the connective tissues of the body. This then has led to developing Gastroparesis, which is a condition that affects the normal muscle movements in the stomach, which means food can sit for hours in the stomach and this causes regurgitation of bile and acid, vomiting, abdominal pain, bloating, weight loss and more.

Every day is a battle for Kira, whilst dealing with the uncomfortableness of having a feed tube, she has no energy, can vomit around 10-40 times a day, suffers with extreme pain and nausea and this consequently means her life is currently on hold due to her condition. This is not how a young person should have to live.

Due to lack of knowledge and complexity of her illness, treatment for this is not currently available on the NHS, so our next step is to travel down to London to pay for private treatment. Doing this is going to be a costly journey, but we will stop at nothing to get our daughter back. She deserves to have hope again, and to start living her life to the fullest once again. If you are able to donate anything, regardless of the amount we will be incredibly grateful. Thankyou for taking the time to read this.

Steve and Donna (mum and dad).