A message from our patron Ben Shephard

Hi everyone

I decided to get in on the act and help raise awareness during Cystic Fibrosis Week. I’ve been tweeting about some of the fundraising you’re doing and trying hard to reach lots more people with news about the work of the Cystic Fibrosis Trust.

I hope you’ve enjoyed reading the blog posts from the faces of Cystic Fibrosis Week. I’ve been a patron of the CF Trust for a good few years now and I’ve been lucky enough to meet lots of young people living with CF just like Aaron, Cassie, James, George and Sam. One thing that always stands out for me is how determined and positive people living with CF are, despite having to do so much treatment every day just to keep well.

Meeting lots of different people with CF has inspired me to do my bit to raise funds for the great work of the CF Trust. I’ve run London and Tresco Marathons, played in charity rugby and football matches, and last year ran 5 marathons in 5 days! That one was a killer! For some reason we've agreed to do it again this year but now is 280 miles in 7 days so wish us luck!!!

I'm also doing the 3 peaks in June with a good mate Oli Lewington who I met running the Tresco Marathon three years ago. Oli has CF and has also received a double lung transplant so it's a massive challenge for him but he typifies the spirit of all the guys with CF that I've met.

They're the reason why I do all this. To try and ensure that they get the best clinical care and treatment, get the right support during their life, and that we can continue to fund research into treating the causes and symptoms of CF.

If you’re reading this and want to do your bit too, think about making a donation at www.cfweek.org.uk and follow the CF Trust on Facebook and Twitter. I am really proud to be a part of Team CF and have no doubt this CF Week will be a huge success.

Cheers

Ben xx

Here’s a special blog post from Gwennan Jones, Deputy Head at Sam Roonan’s school.

Sam is much like most of our year 7 boys here at Warblington School in Havant near Portsmouth. He is talented, chatty, sociable, determined, competitive, inquisitive and sporty. Only unlike any other boy in year 7 or indeed any other student we have at our school, Sam has Cystic Fibrosis. The most important thing for us all here is that we remember the first way I described him and treat him for the vast majority of the time like any other boy in year 7…rather than letting CF dominate.

Just like any other year 7 student, Sam is unique. Warblington prides itself on its ability as a ‘small’ school (just over 650 students) to treat each and every student as an individual and Sam is absolutely no different. However life for us with Sam at school and life for Sam at school with us is more unique than most!

I knew very little about CF before Sam joined us in September 2010 and didn’t really realise or understand what we would need to do or how, to make sure that Sam enjoys his school days with us the same as all of his friends and has those amazing memories that we all have of secondary school, despite the complications of living and learning with CF.

So what’s school like for Sam from my point of view? If Sam is well enough, he comes to school and goes to his lessons that we have timetabled all on the ground floor. He is treated like any other year 7 and loves the challenges of all subjects including PE! He has a dedicated small medical room where his physio takes places twice a day when he is at school with either his teaching assistant (TA) or physio from home. Either a TA or one of his friends carries his bag and his oxygen tank between lessons. I communicate frequently either by telephone or e mail with Sam’s mum or dad to ensure we are all aware of priorities and issues that may come up.

If Sam is not well enough or if there is an increased infection risk at school, Sam works from home. Instead of sitting at a desk without interacting with his peers, we use Skype to fully integrate Sam into his lessons. Not long after he joined we realised that the Netbook he had been using at Primary school to keep in touch when he was medically unable to go to school was just not fit for purpose. Working closely with Sam’s mum Lisa, I put together a proposal to the Local Authority to fund a Macbook to enable high quality virtual interaction in the lessons via webcam. It is just brilliant! Sam can be transported into the classroom via webcam and projection onto the ‘big screen’. This means that Sam can do everything that any of his friends can do who are actually in the lesson from answering his name on the register, preparing a group presentation, class reading of a set text for English, undertaking a Science experiment to watching a Food Tec practical demonstration. Teachers ask him questions, he asks them questions. It is amazing! People that come in to see it are speechless at the way in which all the teachers are using it to make sure that Sam does not miss out on all aspects of school life. In fact, when I walked past my office the other day at break time, I had set up the Mac for Sam’s friends to Skype him at break time, so he doesn’t miss out on the socialising as well as the academic aspects of school. On screen was Sam with a yellow ‘post-it’ moustache and sat behind my desk were two of Sam’s friends, both with similar ‘post-it’ moustaches having the most amusing conversation. I couldn’t stop laughing…

Sam has raised the awareness of all of us at Warblington of CF. Our non uniform day this term will raise money for CF and Sam’s sister Josie and me are going to run assemblies for all year groups to continue to raise awareness with all our students. Although we never forget that Sam lives and learns with CF everyday, to us here he is an incredible individual who is able to make you smile at his mischievousness, divert your conversation with his intellectual and very carefully planned questions, and leave you in total awe of his resilience.

Living with CF - model Cassie Hawthorne

Hey!

I'm taking over the blog today, my name is Cassie Hawthorne, I’m 21 and I live in Stourbridge, in the West Midlands with my Mum, Dad, sister Carly and our unwanted guest Cystic Fibrosis.

I was diagnosed in 1989 at just six weeks old. The hospital where I was born were in the process of trialling a heel prick test and this is how I was picked up. I had no symptoms and for the first six weeks my parents, older sister, and grandparents were celebrating the new and what seemed healthy arrival.

At around primary school age I was always made aware of what Cystic Fibrosis was and how it would affect me. But being young and naive I just told people it made me have a cough and loved the attention that my classmates gave me for showing off my tablets and having days off to go to the hospital. It made me feel special and I enjoyed being different and that is still how I see it 15 years on. It is never something that I have been embarrassed about or ever tried to hide, this is me, and people can take it or leave it.

I was a patient at Birmingham Childrens Hospital and in 1998 aged 9 I was first admitted for a two week course of IV antibiotics. I don’t remember much about it just a lot of playing with other children, lots of chocolates and visitors, which at that age meant hospital to me was like a holiday.

I was then admitted another 5 times up until I was 16. On my last admission I was approached by a photographer who was putting together a publication on Birmingham Children’s Hospital. I was asked to appear in the brochure and depsite feeling very under the weather, and in my eyes, looking very worse for wear, I agreed. The photos were taken and published and before I knew it I was approached by a model agency.

Since then I have worked on major campaigns and have loved every minute. I love having my hair and make-up done, wearing amazing clothes, and forgetting about CF for a few hours whilst I pose!

I am lucky that I have kept fairly well as an adult with CF. From the age of 16 I began to realise and understand a lot more about Cystic Fibrosis and prepared myself for what problems I may face in the future. I took it upon myself to keep as fit and healthy as I could and this proved a success as I wasn’t admitted for another course of IVs until last year at age 21.

Keeping so well during these years meant I became a pupil at a top sixth form college, came out with 3 A Levels, all graded above a C, and fulfilled another dream of mine; to travel. I spent 4 months travelling Australia and spent Christmas and New Year on the beach, away from all the nasty colds and infections at home! I kept well, didn’t need any hospital treatment, and came back with a tan to die for….and very toned biceps after 4 months of lugging a suitcase full of meds around an area the size of Europe! As you are reading this

Having Cystic Fibrosis can be quite lonely, as you are not allowed to meet other people with CF. I have made a few friends with CF on Facebook and on the CF Trust message boards which helps as we can talk about what we’re going through, things that other people wouldn’t understand. I am really pleased to be one of the faces of Cystic Fibrosis Week as I want to show young people living with CF that if you keep on top of all your meds and physio, you can achieve your dreams and live life to the full.

You can get involved in Cystic Fibrosis Week by making a donation, sharing your story about living with CF, taking part in a fundraising event or organising your own, or helping to promote CF Week on Facebook and Twitter. Just visit www.cfweek.org.uk for more info.

Love,

Cassie xx

Living with CF - the Davison family

Hi there, I’m Sophie and my husband, Iain, and I are parents to two gorgeous boys, James, and George, who both have Cystic Fibrosis. Almost three years ago, when George was three weeks old, we were given the devastating news that both our sons had Cystic Fibrosis. The day before we were given the diagnosis James was admitted into hospital with pneumonia and was seriously ill. That day it literally felt like our world had fallen apart and couldn’t get our heads round the fact that our little boys had such a serious condition that would affect their lives forever.

Living with CF can be quite tough as it means constant medication and physiotherapy twice daily. At the present time, we are told that only half of those living with CF are likely to live past their late 30’s. Obviously this fact plays heaviest on our mind as we don’t know exactly how our sons’ lives are going to pan out.

After the initial shock of the boys diagnosis, I took on the attitude that if it is possible that my sons may have a shorter life than the average person, then I am determined to make sure that they enjoy their life to the fullest and to not waste any opportunities to have fun with them. One of the best things we like to do with the boys is to take them on holiday, as my husband and I see it as extremely important quality family time, where we can try and forget everything and just enjoy being with each other. Six weeks after the diagnosis came, we decided to go ahead with a family holiday that we had booked before George was born. My husband and I felt still felt quite nervous about it as we were still getting to grips with the new medication and physiotherapy routine but I think it was the best thing we could do. It was great to be able to have a relaxing and happy time together after all the hell of the past few weeks.

After that we haven’t looked back holiday wise! We have visited Spain several more times as we have a small apartment there. We also had a fantastic two weeks in Jamaica 5 months after the diagnosis. A month before we went to Jamaica we discovered that James had contracted a bug called Pseudomonas and James was have antibiotics twice a day through a nebuliser, but that didn’t faze us, we just packed up the nebuliser into our hand luggage and prayed that the airport didn’t stop us with us “suspicious” luggage!

The best holiday so far was a month long trip to Australia over Christmas 2010 to stay with my sister and her family. Once again, something major happened just before the holiday and James was again admitted into hospital with a chest infection and we did think at one point we would have to cancel our much desired trip. But the little fighter James is, he was soon well enough and after a bit of a delayed flight because of the snow, we finally made it down under! The boys had an amazing time and it was so fantastic for us all to spend time with our much missed family. We did fill an entire suitcase with medication (see photo!) as it was summer over there I think it did both the boys the world of good health wise, running around on the beach and swimming in the sea was excellent physio for them and when we got home they had both put on lots of weight and grown loads!

We are now planning our next trip, where to go now?! So, despite having CF, nothing is going to stop my boys, they may have CF but CF certainly doesn’t have them!

Thank you for reading and getting involved with CF Week. With your help James and George will have a long and happy future ahead of them x

www.cfweek.org.uk

It’s here!

After months of planning, Cystic Fibrosis Week has arrived and we’re sliding in head first with a big WOOHOO!

Everyone in the family is well, everyone has a t-shirt that fits and everyone has had a haircut ready for the photo (yes, the boys have had haircuts, believe it or not!). We're all doing our bit this week and we're ready for action!

Now it’s here, it feels like the fun can start. It has been a bit like planning a wedding and all of us at the Cystic Fibrosis Trust just want everyone to have a great time – oh and raise lots of money of course! There are so many events happening, all inspired by our five faces of Cystic Fibrosis Week – enjoy their new videos at www.cfweek.org.uk

Whatever you have planned I hope it goes fantastically well, you have an amazing time, you tell us all about it (cfweek@cftrust.org.uk ) and you come back and do it all again next year! Remember to keep looking out for our Facebook and Twitter updates this week, come back to the blog to read some guest blogs from the faces of CF Week and if you can't manage to organise or attend a fundraising event you can make a donation to our vital work here.

Thanks for reading my ramblings,

Speak soon,

Nikki x

The countdown has started!

Well, we’re into May and it’s less than a week to go until Cystic Fibrosis Week. All of the planning and preparing has been done – it’s time to go for it! I can’t help thinking that the Royal Wedding seemed to be a huge success and they had a similar run in time to us, so Cystic Fibrosis Week should be just as huge – I don’t think I can persuade anyone to let us have another bank holiday though! I have booked sunshine for the week so I hope that comes off :)

We had a fantastic long bank holiday weekend with street parties and barbecues, one of my friends, Sara, wore my wedding dress for most of the day, every party should have a princess – obviously I would have put it on if my hair was styled more like Kate Middleton’s, it had nothing to do with the fact that I may have put on a little weight since 1990 when I wore it for real!! The boys both did their paper rounds and there was much grumbling about the size of all the colour supplements that had to be folded carefully and put through letterboxes – no day off for them!

I think we were all ready for a return to normality when Tuesday came around, but Beth had another day off school as it was clinic day up at Great Ormond Street. She went off with her dad Graham and all was well, she had grown a little and her weight was up too, lung function was as expected so we just need to keep on doing what we’re doing for now. She stopped off for a Nando’s treat on the way home and then polished off teacakes and Easter egg as she walked in the door – no wonder her weight is good at the moment. Here's a photo of her above enjoying her dinner!

We’ve got a busy weekend ahead planned too – it’s my nephew Sonny’s third birthday so Saturday is party day; I’m making the cake, a pink number three, I’m sure he’ll grow out of that colour choice fairly soon! Then on Sunday it’s the bluebell walk at Ashridge Forest near Berkhamsted, Herts and Cystic Fibrosis Week kicks off! There are loads of people already registered for the walk and fundraising hard, it looks like it will be a bumper year for walkers. We’ve got nurses from the local hospital, friends, family, and lots of people living with Cystic Fibrosis in various ways. If you want to join in, it isn’t too late; you can register on the day. Just let me know that you’re coming along so I can make sure there is a Danish pastry and a bottle of water ready for you at the half way mark! You can drop me an email about this event, or any others from our website at cfweek@cftrust.org.uk

If you can’t make it to an event during Cystic Fibrosis Week then why not show your commitment during the week by signing up to an event later on in the year, there are loads to choose from, many are on our website www.cftrust.org.uk Now is the time to change your profile pictures on Twitter and Facebook too with our special Twibbon, it’s easy to do, even my mum has done hers! And get as many people as you can to ‘like’ our Facebook page and follow us on Twitter, spreading awareness is as important as raising funds during our special week.

I’ll drop you a quick line over the weekend, but for now thanks so much for all your support and kind words - Cystic Fibrosis Week is going to be a blast!!

Nikki x