Give Antonia the medication, nutrition and care she needs

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 We need to make an atrocious situation public and get some action. It’s a life and death situation that should not exist in 2018 in a civilised country like the UK. A mother is doing anything and everything humanly possible to fight for the life of her beautiful, amazing 21yr old EDS suffering daughter. Antonia Payne-Cheney has survived many years of constant pain with no quality of life. She has recently, with the aid of some amazing public support and donations, received life-saving spinal and brain surgery in Barcelona that the NHS we unable to provide. Now, having spent time rehabilitating she has returned to the UK and she looked amazing. We had never seen our dear friend sit upright on her own, in a normal armchair, never seen her stand up unsupported, nor walk a few steps and there she was doing all of these things and looking forward to getting stronger day by day.
Unfortunately here we are a few weeks later, Antonia is now being refused the painkillers and nutrition (through a line directly into her heart) that she was given following the surgery. The discharge document from the wonderful clinic in Barcelona is being ignored and Mother Victoria and brother Samuel have to stand by and watch the deterioration as she receives only some of the same medications that she was being given before the surgery which were clearly not sufficient for her very complex conditions.
Victoria is Antonia’s carer 24/7, she is exhausted and yet faces whatever every new day throws at her, whether it be a seizure, respiratory failure, sepsis, anything at all.
As close friends we are trying to find a way to get some action, some help and expose the situation for what it is, totally unacceptable.
Unfortunately, unless something is done very soon, Antonia could be yet another in the long list of EDS patients who lose the battle for life.
It is absolutely appalling that nothing has been learnt by those who have already been lost by means of suicide, failure to diagnose or understand the illness.
We treat self inflicted illness and injuries caused by smoking, drinking alcohol and taking drugs without thinking twice. We prosecute people who treat animals badly but we are treating, or not treating in this case, a British citizen who deserves a life with quality.

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