B positive

Since May 2017 E has been on an intensive, time consuming and sometimes soul destroying treatment regime. The aim - to rid her lungs of   Pseudomonas aeruginosa . She has inhaled antibiotics twice a day – every day and had them pumped into her veins. We wanted to eradicate this bug which had made itself at home in her lungs. We didn’t want any permanent, lasting damage. She needed to have 12 months clear before we could stop this additional treatment. The pseudomonas grew back. Twice. Reset the treatment clock. Positive mind-set. Resume our new normal. We have poured our hearts, minds and toddler negotiation skills into her treatment - never missing any. This has meant we have had to plan days out and activities around her treatment. Ensuring we always had access to electricity, to a television (distraction!) and to hygienic surfaces so that we could clean, air dry & sterilise medical equipment. We still had fun, adventures & lots of love but it was alwa

It's been a while since we blogged but, amazingly, we still wait to get access to Orkambi. The CF Trusts' campaign has led to the Heath Select Committee seeking evidence from people. So, here's what I've just submitted.  Good afternoon It was almost three years ago that my wife and I became very proud parents to a wonderful girl. She was everything we ever dreamed of. Within a fortnight of our dreams coming true, we were hit with the bombshell of her diagnosis of Cystic Fibrosis. The staff at our hospital were, and continue to be, superb and incredibly supportive. At our first meeting with them, they explained that, for the first time, there are pharmaceuticals available which can treat the underlying cause of the disease and that there are reasons for optimism. Since then we’ve devoured research papers, taken part in clinical trials and had that optimism repeatedly dashed by the inability of the two parties to come to an agreeme

Ive written a letter to the new health minister. And here it is. Dear Mr Hancock Congratulations on your recent appointment as Secretary of State for Health and Social Care. I am writing to you as a concerned father to a two year old girl who you are in a position to help. My daughter has Cystic Fibrosis (CF) – an incurable life-shortening genetic disease. She is in the care of the excellent staff at Royal Manchester Children’s Hospital and, like the thousands of others with CF in the UK, has a daily routine of treatments to maintain her vital functions as long as possible. Much of her treatment involves the consumption of medications which help prevent infection taking hold and destroying her ability to breathe. This masking will only last so long and there is a grim and inevitable end point to this path of treatment. New treatment options are the things which I cling to, to provide my daughter with an alternative route as outlined above. News of clinical tria

Among many others, I've just read the remarkable statement from Vertex Pharma which appears to draw a line under the negotiations for access to Orkambi - and other drugs - for British patients.  Having wrote and deleted a number of tweets in response (mainly due to profanity), I feel the need to write something longer - this is catharsis.  Orkambi receipt found online It seems clear that negotiations are over and there's no next step in the offing. Describing the NHS as 'outrageous' and the Government as 'unconscionable' is as clear an indication to that as anybody need. Vertex's Trumpian assertion that they offered 'the best offer in the world' smacks of exasperation on their part as well as shifts the blame. I find it baffling that the Vertex people who have agreed the wording of this press release - presumably this would have gone right to the top - close with a plea to Government to intervene. Guys, a little secret for you, you have been

We are in full fundraising mode , preparing for our walking challenge to raise money for the CF Trust.   This process has required me to expose myself - to tell a wider circle of people about Eloise's CF to enable us raise as much money as possible.   Why can it be difficult to tell people, to ask for donations and show the reality of Eloise's life? Three of The Striding Sisters. Our training is in full swing! When Eloise was a baby my attitude towards disclosing her condition changed daily! Some days I measured success by getting through the day and not mentioning CF. I had made it - got through the day without anyone knowing that CF was having a profound impact on our daily lives. Other days I blurted it out & told anyone who would listen. By telling people I was proving to myself that I was okay, coping and in a place where I could talk about it without getting upset. I hope I am more balanced now (although I do have good & not-so- good d