Happy Christmas from Team Corr

As we approach the end of the year I would like to just take this opportunity to thank everyone who has supported Team Corr over the past year. You will all be pleased to hear this is my last post of 2015 and will return in January to continue to raise awareness and funds for Cystic Fibrosis. No ramblings for a few weeks!


We have had an amazing year and my personal highlight has been seeing my two gorgeous girls play, laugh and love each other. They are so cute and definitely double trouble! Another highlight has been Harriet having a successful stoma reversal operation, even if it didn’t quite go to plan. She took it all on the chin and bounced back with her usual resilience. Stoma bags almost seem like they never existed!


Of course I can’t not mention the huge efforts made by our friends, family and strangers to fundraise and support our cause relentlessly across the year. From quizzes, art fairs to The Great North Run to name a few, we will hopefully all keep going throughout 2016. We can’t thank people enough and truly appreciate every single thing no matter how big or small.


The drive for stamps has gone through the roof, my dad can often be found wearing a miner’s lamp on his head trimming stamps in the small hours! He has posters all over and asks everyone he comes into contact with if they can collect stamps for us while showing them pictures of Harriet! It is such a worthwhile cause and obviously a lot easier than continually asking people for money which doesn’t sit easy with me.

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Since starting this blog I have made so many lovely online friends if that’s the right word! The support from other CF Mams is so brilliant and for that I am so thankful. To have had messages from people who were in hospital with their precious newborn babies facing bowel operations and a CF diagnosis, saying that my blog has helped them makes it all worthwhile. To give those people just a glimmer of hope in such horrible darkness is great. At that point we just felt our lives were over and things would be horrendous from then on in. Yes, it hasn’t been easy at times but the good times have by far outweighed the bad and that’s the message I endeavour to get across.

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Finally, thanks to everyone who continues to read every week and share. Every little bit helps and each week I am always amazed by a new message or comment from a family member, friend or stranger.

I hope you all have a fantastic festive period. Make sure you enjoy every single moment with those you love, I know we will be.

To find out more about Cystic Fibrosis click here.

 

The Fight for Precision Medicine

Last Sunday I was devastated to hear that Ireland had declined a potentially life saving drug to help the majority of cystic fibrosis patients. Why? Cost. This is the first drug EVER to address the root cause of CF so it is potentially life changing. Up until now all CF associated symptoms have been managed and treated, not stopped. This drug, Orkambi, corrects the basic defect, therefore, treating the underlying cause. For me and my one year old daughter who is eligible for this medication, this is everything. If her decline in lung function could be stopped and she could live a full, long, happy and healthy life then how can a price be put on that?

Jillian McNulty, a leading campaigner for the drug, penned this open letter to highlight the importance of approving these drugs for all suitable CF patients…

 

‘I’ve just sent this letter to Tony O’Brien & NCPE… I feel like saying so much more, I’m angry, I’m heart broken, I’m frustrated, I’m crying as I type. My life can’t go back to what it was, it just can’t…We need to get Orkambi VIRAL. SHAME them.

To the NCP/HSE…..How much is my life worth? Why put a price tag on my life?

Orkambi. To most people this word means nothing. To anyone connected to the Cystic Fibrosis world, it’s the pot of gold at the end of the rainbow. Two years ago I was one of 8 patients over 14 in Ireland to be chosen to take part in Phase III of Orkambi trials. The day I got the phone call, I cried, I then smiled so hard my jaws hurt. I had won the lotto, I may not have had millions in my bank account, but I was being given a chance of LIFE, I had won the health lotto.

In the few years previous my Cystic Fibrosis had been in a sharp decline, my lung functions had a massive 20% drop in the year before Orkambi. And while I was as active as I could be; running, cycling it took its toll on my body, a 2km run took me treble the time it took a healthy person, I needed naps to get through the day, life was a struggle, I could never plan anything more than a week or 2 in advance because CF would always get in the way. My hospital admissions were every 4-5 weeks, most of the time I ended up in hospital for a minimum of 6 weeks but my average stays were 7-8 weeks, but at times they lasted up to 15 weeks, I had spent most of my year in hospital, with bad exacerbations came horrendous symptoms. Pre Orkambi I managed, I pushed through, my stubborn nature made sure of it. If you’re healthy person reading this, I bet you never give a second though to washing your hair or having a shower? Something so simple but a daily necessity became such a painful battle within my body when I had an exacerbation. Taking a shower at times became so difficult it hurt, I needed a chair to sit down on, my whole body ached as I gasped trying to take in as much breath as I can to actually function. For months at a time I didn’t have the energy to wash my own hair, spent a fortune in the hairdressers as I wasn’t physically capable of washing my own hair.

Then came Orkambi, within a few months, my body started changing, during my runs I could breathe deeper, it’s not something I can explain correctly because I don’t think I’ve ever known what it’s like to breathe properly. But I was no longer coughing & spluttering so much after running, gradually my need for naps became less and less and one day it just hit me that I hadn’t napped that week at all and I was like OH MY GOD Orkambi is working, Orkambi is changing me, Orkambi is curing my body. Suddenly I had boundless energy and little things no longer took it out of me! My hospital admissions were happening every 3 months, while I still didn’t plan I was hopeful things were changing. Fast forward to December 2015, I have been out of hospital for 11 months, I’ve had no decline in over 2 years, I am physically stronger, I can now plan things months in advance. I no longer need daily naps to function. I have a life, a life that doesn’t revolve around CF & constant hospital stays. I feel “normal”. No one can argue with these FACTS. Orkambi has transformed my life.

Why am I writing this? While I have known for a long time now how much Orkambi has transformed my life, this week I got a very unequivocol reminder how quickly things can change. Last week I officially finished phase III of the trial, which means I would gain access to Orkambi on an open access programme until it becomes available in Ireland. However I am still waiting for the marketed dose to arrive, I have been without Orkambi for just over a week and I am struggling, really struggling, my life is back to 2 years ago, I am extremely breathless, even walking a few steps exhausts me and brings on coughing attacks while I try to catch my breath. My lungs just feel heavy again, chest physiotherapy is getting harder by the day, mucous isn’t moving the way it has been on Orkambi, I began having these symptoms within 24 hours of being off Orkambi, I am fearful that I will end up in hospital. This is heart breaking as I am almost a year out of hospital, the longest period of time I’ve ever had hospital free since my hospital admissions began. And my fear is the longer I am without Orkambi the worse I will get. I know I will have it within a few more days so I will be ok. But for those who haven’t even had the opportunity to give this drug a try, the wait for them is agonising while the battle for recommendation/reimbursement continues.

So, can someone please tell me why my life and the lives of other CF patients in Ireland have a price tag on them & why we have to endure a harrowing wait while a decision that will affect our lives is being made? The news today that the HSE has ruled out funding for Orkambi is utterly devastating. There are people that desperatly need to start this drug now, they are desperatly clinging to the hope that one pill may help them live a near normal life without CF getting in the way, a chance to perhaps stop progression in it’s tracks and get to spend longer with their families & loved ones. We are young generation just wanting to have a quality of life we deserve, CF is a cruel unforgiving illness and when there is an opportunity to acquire a drug like Orkambi it should be fast tracked and made available to patients within a few weeks of European approval, CF will not wait for a decision to be made over months and months, CF will progress while people are made wait, CF will steal more lives while the decision to put a price tag on our lives is being discussed. I’ve seen first hand the difference one pill can make to my life, I now have a quality of life and quality of life is priceless.

Jillian McNulty,
Cystic Fibrosis Campaigner & Fundraiser.’


Ireland’s refusal now makes it very easy for the NHS in England to follow suit. As Jillian says we need to fight and get this drug to patients now as time will sadly cost lives. The drug has been approved in America and Germany. Patients are already benefitting. We need to follow suit.

When the time comes – and it is coming – I hope to be able to count on YOUR support in shouting very loudly about this to all and sundry!

To read more about Orkambi click here.

To read more about Cystic Fibrosis click here.

Enchanted Christmas at Whitworth Hall

Last weekend the country was battered by gale force winds and driving rain. Clearly THE best time to go to an outdoor family Christmas event with two small children. Being a big fan of Christmas, this sounded right up my street, much to my husband’s dismay, so when we were offered the opportunity to visit, I was over the moon!

The attraction promises a unique family day out which includes feeding Santa’s reindeer, character experiences, crafts, a train ride and of course a trip to meet the big man himself. Before I divulge our thoughts on Enchanted Christmas I will say that at first glance the prices do seem a little on the expensive side. It is £25 per child, £15 for under twos and £21.50 per adult. Having been and had the experience I do think that these prices are fair for everything included in the half day trip.

When we arrived we checked in with our elf guide and were asked if we would like to feed the reindeer. The least said about this for me the better as my three year old got caught on the head by one of the stags antlers. Now this could have been potentially very dangerous as we all know. The staff were very good and looked after her accordingly. Apparently the larger ones don’t usually come over and must have been particularly hungry that morning. Hopefully this won’t happen again and lessons have been learned. It’s just a pity it was at our expense.


Refusing to let this and the truly awful weather put us off we continued on to enjoy our day. We were on a morning session which runs from 9am till 1pm and our first stop was to meet Fairy Tree Topper. All of the sessions take place in huge tipis dotted around the grounds of the impressive Whitworth Hall. The only one further out is meeting Father Christmas, hence the train ride to The North Pole.


Thankfully the tipis are warm and cosy, some with blankets which I thought was a nice touch. Fairy Tree Topper entertained the children with some songs and games which my daughter really enjoyed. She also loved the opportunity of sitting on her special throne! Next up was a short walk to meet Mrs Claus, whose elf helpers greeted us at the door with hot chocolate and warm cookies. Again, another nice touch.


Next up was a ride on the train up to meet Santa Claus. A wonderful elf pushed our buggy all the way up for us in truly awful conditions so we could all enjoy the train ride together. In fact all of the staff really impressed all day; they really made the experience for the children. Santa’s tipi was by far the best with a gorgeous log fire on entry to help set the mood. Santa was fantastic, taking his time with all the children in our group and speaking to them about personal things (parent’s email information before the visit!) Both of my girls got gorgeous gifts from Santa. I won’t spoil it and say what but a lot of attention to detail and effort had been made.


We then headed back on to the train to meet Jack Frost who looked amazing. Unfortunately my daughter didn’t think so and was terrified! We ended up giving this one a miss and a lovely elf took us to the next tipi. The next activity was craft making, and there were refreshments available in here as well. After a well needed hot drink we decided that this would have to be our last stop at Enchanted Christmas as we just couldn’t keep our baby out in such bad weather any longer. She has cystic fibrosis and was already a little sniffly before we went and we really can’t risk her getting sick.


What I would say is ensure you are all well prepared for the mud! Thankfully we had all wrapped up with wellies on etc but my buggy was a complete state. At one point I even contemplated chucking it in the nearest bin! However, as the rain was so torrential, it managed to wash off before we headed home. All in all we had a lovely morning – my three year old really loved it and would definitely return next year.

If you would like to find out more and book Enchanted Christmas click here.