Following years of investigations, tests and multiple surgical procedures, my 14 year old daughter Lauren has been diagnosed with gastroparesis. A chronic condition in which the spontaneous movement of the muscles in your stomach does not function normally.
Lauren has endured gastric issues from age 9, however in January this year, something that seemed to fit the pattern of her usual ‘flare up’ symptoms didn’t get better and instead worsened.
Since March 2015, Lauren has been unable to eat or drink anything and recieves all her nutrition through a nasal tube which feeds her directly into her bowel. The feed is administered via a portable pump which she is connected to continuously for 20 hours a day, 7 days a week. Her tube needs to be changed every 10 weeks, guided through her stomach by a radiologist, without anaesthetic. A procedure which has taken up to 2 hours.
As all the tests looking for an alternative, more treatable diagnosis have not showed anything in particular, Laurens best (and possibly only) treatment option is to be referred to a consultant in Chelmsford in the New Year for consideration for a gastric pacemaker. This pacemaker would hopefully stimulate the nerves in Lauren’s stomach enabling her to eat again.
We have been warned that this rather costly and still somewhat unproven surgery is not routinely funded by NHS.
Hence I am asking for help
The estimated cost of the gastric pacemaker surgery and initial maintainence is approx £30k plus follow up appointments. This seems an awful lot of money for surgery which does carry a relatively low success rate but, to be honest, any chance – even if small – is worth taking if it may mean Lauren can eat or drink even a small amount of food again.
This may seem quite premature to begin a fund raising campaign even before she has been seen by the surgeon – however I am feeling pretty useless myself and this is one small, positive thing I can do right now to try and make things better for Lauren.
My beautiful, positive, happy teenager who is dealing so fantastically with this really rubbish situation deserves a chance to be well again.
We will obviously continue down the NHS route and attempt to obtain full funding if possible. If by some miracle we manage this, I will donate all moneys raised to either Great Ormond Street Hospital or a suitable Gastroparesis Charity.
It is not until you are faced with a situation where you are unable to eat or drink anything that you realise quite how much of our social interaction and life in general revolves around food.
If anyone feels they are able to help in any way it will be much appreciated.
Jo, Sam, Holly and Lauren x