Hi Banana Crumble!
Well what can I say. The London Marathon this year has been quite an experience. From reaching a personal milestone of raising £200,000.00 for Cystic Fibrosis the night before the event, to participating in the hottest London Marathon in history. The only way I can describe the heat was like running for three and a half hours in a sauna. I was playing mind games with myself the whole way through, one minute I was going to walk or quit, to I’ll run until the next water station and then stop. Then my head told me that look at people fighting a battle every single day living with Cystic Fibrosis. They’re battle is continuous and that mine is only temporary. That’s what kept me going right to the finish without stopping. My toughest marathon ever.
The fight in the UK continues to try and get the drug Orkambi and the exciting pipeline deal of drugs that are coming along approved on the NHS for CF patients. We are blessed because our 26 year old daughter Rachel is on Orkambi due to clinical trials for nearly five years. It has totally transformed her life. Rachel has a Degree, Masters and later this year will become Dr. Rachel McHugh in Psychology. We are so very proud of her. We have to keep pushing at our government, NHS and Vertex the pharmaceutical company all the way to get a deal struck because people are dying as we speak who cannot get access to Orkambi. The drug is sitting on the shelf available but it’s deemed effective but too expensive. What price do you put on someone’s life ?
On Friday 22nd June we are holding protests in N.Ireland, England, Scotland and Wales to let our voices be heard that we wont stop until a deal is done. It’s also CF week and the 22nd June is also wear yellow day for CF so we are hoping to have a sea of yellow all over the four nations on that day with as much media attention as possible to highlight our very important goal. Let’s hope we can get a massive turnout on the day to show that the whole of the UK are behind us. We won’t stop until we get Orkambi approved and let’s hope it’s sooner rather than later before more lives are lost.
This photo is me just after finishing and then meeting my wife Eleanor a few minutes later. Thanks again Banana Crumble for your tremendous support especially raising over £2000.00 for CF. We are all so grateful.