Sensationalism.

Dismayed to see sensationalist stuff in the paper today (see here) about PReP, a drug which prevents HIV infection, and how a ruling which enables widespread prescribing of this highly effective drug to be 'preventing children with CF having life saving drugs'. The problem is exactly the same, decisions have to be taken as long as the NHS has a limited pot of money, and big pharmaceuticals insist they need to recoup costs on new drugs to fund research into the next wonder drug. What is the government doing about this? To create a level playing ground that helps all? This playing off of one drug/condition against another helps no one - there has to be a middle ground here. Why is there not more in the news about the work that could be done to build bridges between those developing these life changing drugs and those funding them? (Meanwhile Theresa May's leopard print shoes make other exciting headline news). 

ANYHOW! A health update as promised. Isaac is having a great month, tummy never altogether great, but not awful, and relying a lot less on the anti-sickness meds. I think it's helps that it's the holidays and he gets to sleep a bit later. Chest wise he is really good right now; this feels like the longest stretch out of hospital in a long long time (I have decided to cease to believe in luck and jinxing... So feel safe to say this now, without fear that it will all go wrong tomorrow. Luck is what we make it). People with CF tend to need more salt in the hot weather (the basis of CF is the abnormal movement of salt and water across cells) and Isaac takes salt tablets all year round because of his digestive problems, but in summer especially he gets very tired unless he snacks on salty stuff too. The CF diet is very much the antithesis of ours! 

The kids are all enjoying the holidays, lots of paddling pool action, and we have lots planned, before the BIG school start in September (Rosa to Primary, Isaac to Secondary). We are busy working on the house (converting the garage into a games room). So for now, life is good. And I am feeling very lucky. One thing about a life with CF, or similar, is that it makes you really appreciate the good bits. Always smelling the roses. 

Good night all, and thank you x 

Eva wrote that before her death she wanted to leave;

a mark on the world
a difference
some proof that i had been here
something to say that i mattered
that when my body left this world my soul had made its imprint

Read this to see how Eva's family continue her legacy.