Mother of terminally-ill daughter pleads with Brexiters to reject no-deal Brexit

Posted on Twitter by Jo Walton:

I apologise in advance in case my language in the following post offends anyone’s sensibilities, but I am not going to apologise for the content.

I am experiencing more and more self-satisfied, inaccurate and self-congratulatory posts expressing outrageous joy at the prospect, for this country and its population, of a NO DEAL BREXIT.

I would like those who think it is a good idea to read what follows and take in the implications.

As many of you are aware, our daughter, Sarah, is terminally ill with a degenerative neurological illness caused by a rare complication of measles infection.

Sarah

She is not going to get better and for the last 15 years the prime role of myself and Mark, her dad, has been to make her passage through what is left of her life as pain free and comfortable as possible.

In addition to the care we give we rely upon a complex combination of meds which deal with and prevent symptoms whilst maintaining her bodily functions. In addition we have a complex nutritional regime which involves baby products and medical food products.

We also need to ensure that her skin remains intact – not an easy task when the person is double incontinent but involves quality prescription emollients and continence products to ensure that her skin does not break down and leave her open to infection.

Infections anywhere in her body can lead to pneumonia which is an extremely unpleasant death being gradually drowned in their own lung fluid.

I undertook a little, although not exhaustive, exercise last night with Sarah’s prescription items and nutritional items. Of the 20 medications which she receives on a daily basis, most of them more than once a day, 11 of them are made in countries in the EU.

Of the 9 remaining, although manufactured in the UK, I have no way of knowing how many of those ingredients are obtained from supply chains in the EU.

We are regularly experiencing issues with some of her medication where the pharmacy is desperately trying to source preparations from elsewhere because of manufacturing problems because the manufacturer has not been able to access one or more of their required ingredients.

We cannot stockpile our medications because Sarah uses what the prescription amount states and the surgery will not issues prescriptions early. This is indeed only fair – if we stockpile someone else will experience a shortage.

Doing without some of Sarah’s meds for a few hours will have a profound effect on her well-being – being without them for days or weeks could cause irreversible issues and will certainly leave her in extreme discomfort if not real pain.

The specialist baby milk which Sarah uses is made in the ROI, one of her nutritionally balanced prescription foods is made in Germany and the other in the ROI.

The medical protein powder which is integral to her diet is made in Germany, the yoghurt, which has become indispensable to her gut health is made in Greece.

The skin around her bottom is particularly vulnerable to break down and we have achieved this by identifying the best possible product for Sarah’s shape and size – her pads are made in France.

The Cover dries which absorb any leakage to prevent her skin becoming wet are manufactured in Sweden and the little soft fabric pads we use to protect some more vulnerable areas are made in Sweden.

Sarah is not alone in her needs – there are thousands of sick and vulnerable people across this country which are reliant on the supply of complex medication and medical products from the EU and disruption will make their lives intolerable and, in some cases, unsustainable.

Hands up – I voted remain, I am aware that the EU is far from a perfect institution but on balance I felt that the pluses outweighed the minuses. I get it – some of you did the maths and came up with a different answer.

We had a vote, the Leavers won; I am a democrat so I respect that outcome. What you didn’t get as a result of that vote though is the freedom to place thousands of sick and vulnerable people at risk in this country by flag-waving us into a No Deal departure.

This is not a playground spat nor is it a game of soldiers on the kitchen table, this is real people’s lives you are so gleefully playing with up and down this country. Open your minds and see beyond the idiocy.

Don’t get me wrong, I do not have any time for those who wish to overthrow democracy and our constitution and impose the opposite will upon the country, from that which was voted for, without due process.

That in turn will cause its own disruption and the rise of forces none of us should wish to see again.

If having read this you still feel the same about the need to send us over the edge of a cliff then you are not a friend of mine, Mark’s or Sarah and I would ask that you unfollow me. I cannot be friends with anyone who wishes harm on my daughter.

For the rest of you please share this as much as you possibly can, pack it off to your MPs and ask them to think about how their behaviour on all sides is affecting those who cannot fight for themselves.

I cannot watch her endure any more pain and I don’t think I will ever forgive any who make her life more intolerable than it already is.

END