Month: June 2017

Imagine your child is diagnosed with a life limiting condition that has no cure. The same condition that many years ago saw babies struggling to survive past infancy, a condition that even today still sees babies loosing their battle.

A condition that will slowly cause irreversible damage to their lungs, a condition that unless a cure is found will eventually and probably prematurely take your child’s last breath.

A condition that is currently only manageable by taking handfuls of pills, undergoing endless physio and being admitted for lengthy hospital admissions for IVs just to help fight infection and slow the decline.

Imagine living every day being faced with the real possibility that you could one day find yourself burying your child and living knowing that your child is slowly drowning on the inside.

For the parent of a child with cystic fibrosis these are the raw facts. It pains me to write this, it’s the harsh reality and it devastates me to think for us and families like us that it’s all too real.

As a parent of a child with CF you live everyday in the hope that there will be a cure or at the very least something to help slow the decline to enable them to live a long and carefree life, you hope and pray that with advances in medicine your child will be part of the lucky generation that sees an end to CF being incurable.

So imagine that following years and years of research and unsuccessful drugs trials, a wonder drug is made, Orkambi, a drug that has been proven to slow the decline in lung function by around 40%, that has been shown to cut hospital admissions and which can add years onto the average life expectancy for a person with CF.

A drug that you see being agreed and funded in countries throughout the world, this drug has been available to some for years, you have watched those in the US being afforded this drug, you have followed their progress and you hear tales of success and of massive improvements to the health of those fortunate enough to have access to this drug. A drug that is desperately needed for so many right now, that has been designed, perfected and is readily available……..although sadly only for some not for all.

You know this is a huge breakthrough, the drug is a precision medicine which treats the root cause and treats CF as opposed to just treating symptoms which is what you currently do day to day now.

Then you get told that wonder drug is not available to you and others like you, because it’s too expensive and because it was so new that when decisions were being made there weren’t enough statistics to prove its worth.

For the CF community this is reality and this is why on Monday 26th June 2017, the CF family nationwide will descend on the capital and various other locations throughout the UK to protest for negotiations to start to make this drug available for those that need it.

According to the 2014 UK Cystic Fibrosis Registry Report, there are 2,834 people in England, 243 people in Scotland, 118 people in Wales and 101 people in Northern Ireland who could stand to benefit from Orkambi, a total of 3,296 people and at £104,000 per year per patient we are not under any illusion that at Orkambi is incredibly expensive and with the NHS on its knees it is unsustainable.

This is why we need The manufacturer Vertex, the Government and the NHS to get together and talk and to make a deal. A deal was recently struck in Ireland which also included a deal for other precision medicines that are in the pipeline, so we know that vertex can and will move on price, we are hopeful that a deal can be agreed so those that need this drug now can have it.

Because of the different CF mutations my child has it means Orkambi isn’t suitable for him, although I have recently seen research to show that Orkambi has been used in his mutations in some countries.  This Doesn’t mean I won’t stand alongside other CF families who desperately need this drug now; after all this precision medicine is hopefully the start of something big and life changing, unfortunately without Orkambi some of those that need it now may not make it to see that something if a deal cannot be reached.

For the sake of our children don’t put a price on their lives, make a deal so we have less pictures of our babies in hospital beds and more like this……

#ukneedsorkambi

 

Last weekend saw me take on one of my biggest challenges yet, 65km of the Surrey hills. It may not sound much of a challenge to some, after all it is just a case of putting one foot in front of the other, but with very little time to train I was slightly concerned I might not make it. Especially when I saw the training plan and the practice walks some of the other ladies were doing.

Anyone who knows me, knows I love a good challenge, signing up for a half marathon four months after a C section with no training is the sort of thing I do, and every time it’s sheer determination that gets me through.

The weather was perfect and the views of the Devils punch bowl were absolutely stunning, I was almost a little annoyed at myself for having never been there before despite the fact I lived in Aldershot for such a long time.

It was physically demanding and there was a moment in the last five miles that I really I thought I might not make it, which would have been awful considering I was so close to the end, my mind wandered to Chester and to CF and although I was in a fair bit of pain and wasn’t feeling to great, all I could think was that he doesn’t have the option to give up and stop, every day he will have to fight and that is what got me through those last miles; that and my wonderful team mates (and knowing there was a toilet at the finish).

Then there we were at 2323hrs crossing the finish line 15 hrs 57 mins after Jenny Agutter (call the midwife) sent us on our way. We crossed that line in the pitch black, arm in arm; the ladies that have been there for my entire CF journey were there with me for every one of the 80,000 steps I took that day for our babies.

I am always so humbled by the kindness of others, my best friend taking the time out of her day to surprise me with an emotional “Hello” at a checkpoint, knowing that I would only have a few minutes to spare before I would have to set off again, my mum driving to be there for me at the finish. All those people that were kind enough to donate and share our stories.

We raised £17,500, a truly phenomenal amount of money and the total is still rising. I cannot say thank you enough.

I am often asked why I take on these challenges, and the answer is simple really, CF has no cure, so other than the daily routine of meds and physio to keep him well, there is nothing else I can do, being incapable of doing much else and feeling completely helpless most of the time is one of the hardest things to cope with, so I step up and take on these challenges because I feel raising money and awareness are the only things I can do.

There is so much work going on and medicine is advancing and I live in the hope that perhaps that extra £1 I raised is the one that pays for the research that ultimately finds a cure.

As I sit here looking at the remnants of a blister on my foot which is beginning to heal, I am busy planning the next challenge, and am even considering doing it all again next year, I am proud of myself for what I achieved and I hope one day my little boy will be proud of me too.

I am fortunate to have loads of truly amazing friends and friendships that I would be completely lost without.

I have people in my life that have done the most random acts of kindness for me, including breaking me out of hospital in my pyjamas to drive me to Birmingham to be with my baby following his transfer to the Children’s Hospital.

I will always be so humbled and grateful for those who have supported me and stood by me and my family following the CF diagnosis.

After Chester’s diagnosis I also turned to other CF parents for support, they were the ones who had been in the same situation, who had probably all felt what I was feeling and if not had certainly been feeling something very similar and they were the ones that I hoped could guide me in the right direction with everything that was being thrown at me.

I initially joined a few support groups but soon left after finding some of them were not quite as friendly as I hoped. However; I did remain with one small group and for the past two years there has been a small group of us who have probably spoken almost every day since we met online.

These ladies have been there with me through every admission, every pseudomonas cough swab, every moment of guilt and every time I was feeling complete hopelessness. They have offered words of support and wisdom and in the time I have known them there has never been a time that they weren’t on hand when I needed them.

They got me through days where I was feeling down and depressed, when I was overwhelmed with guilt and anger, even when they themselves were possibly also dealing with similar feelings of their own. Always on hand to offer advice and kind words and never ever criticising.

Along with my friends and family, these ladies have been the ones to get me through some of the toughest moments of my life. I class them as my second family, my CF family.

So today is the day, after two years of talking everyday, of sharing our worries, of laughing together, I will actually be meeting these wonderful ladies and together we will be taking on a challenge that is definitely one of the most challenging things I have taken on so far.

Saturday will see us lace up our walking boots and take on the Great Strides South, where we will be covering 65km of the South Downs countryside on foot in aid of the Cystic Fibrosis Trust and all in the hope of finding a cure for our beautiful babies.

We have spent months fundraising and having smashed the initial target fairly early, we raised the target and today our total so far sits at a whopping £14,836 Which is just incredible!

Right now I need to say this; Ladies you have been my inspiration, my backbone holding me up, you have been there at the toughest of times and you are my best friends. I cannot wait to finally meet you.

Emma, so very sorry you can’t join us and that I won’t get to meet you yet, but know that every step we take on Saturday we will take for you and Harriet too.

We often hear people say that Life is too short, and sadly where cystic fibrosis is concerned its often very true.

When you have a child with an uncertain life expectancy it certainly changes your outlook on life and makes you realise what is important.

Following Chester’s diagnosis and all uncertainty it bought, I took a long look at my life and came to the conclusion that things I had deemed important to me were really quite trivial and that my priorities had to change.

I realised my life had become too much about having nice things and luxury possessions, don’t get me wrong I adore my mulberry handbag collection, I mean who doesn’t love a Mulberry and I do like to keep a nice house (well until I had kids) but in the grand scheme of life they are far from important.

My focus shifted from “possessions” to making sure above all else my children have the best lives possible and grow up having amazing memories from their childhood.

By this I do not mean throwing money around and buying expensive toys or going out for meals in expensive restaurants. Let’s face it who’s child ever talks about that nice meal they went for or that really expensive duvet set you bought them. Not mine that’s for sure.

The things they usually remember are the things that cost nothing at all other than the most important currency; time. Taking them on walks, enjoying sausages cooked on a disposable BBQ by the sea, bike rides and picnics along the canal these are the things my kids remember.

I love planning my breaks and days out, nothing beats the excitement of going somewhere new, exploring different places and seeing my boys faces whilst they experience new things. This is probably what has made me such a lover of travelling.

Being outside and experiencing nature, skimming stones or in Chester’s case just launching them into the lake, playing hide and seek, climbing trees, all basic things that they enjoy so much are the things I now focus on.

Hearing my son say things like “Wow what a view” or “This place is beautiful” is absolutely priceless, it makes me feel warm and fuzzy inside knowing that at his young age in the world he’s growing up in he can appreciate the beauty around him and I’m content I am raising a kind human.

I have been fortunate enough to be entrusted with raising two beautiful humans, don’t get me wrong that is certainly not always easy but making memories for my boys is the most important job I have, and I won’t lie, I’m having the time of my life helping make those wonderful memories.