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

It’s almost here…..

I usually work from home and spend a lot of the day on the computer or the phone, but every so often I venture out of my virtual world and work with real people for a day! I met up with some local supporters this week, they are helping to organise a Great Strides Walk in Ashridge Forest, Hertfordshire and a Big Cake Bake in Dunstable, Bedfordshire during Cystic Fibrosis Week – they have a direct family connection with Cystic Fibrosis, as many of our fundraisers do – but are so excited to be supporting the whole CF community. Cystic Fibrosis Week has really brought so many people together throughout the country – all fighting for the same thing! It was fantastic to spend a few hours with them, ordering them some materials to help raise extra awareness on the day and chatting through some ideas for types of fundraising – meeting so many great supporters is why I love my job!

It has been amazing to see so many of your events and ideas coming through in so many different ways, we’ve had emails to cfweek@cftrust.org.uk and the team are replying to each of those individually, let them know how they can help – we need to keep them busy!! Many of you ‘like’ the CF Trust on Facebook and we are hearing about a lot of events that way; the number of people following us on Twitter is also growing and hopefully #cfweek will start trending with more of you tweeting about your Cystic Fibrosis Week plans!

I spent a day down at the Head Office in Bromley too this week – I have been allowed out a lot just lately – many of the staff have signed up for one of the collections so if you are in the neighbourhood pop along to Victoria Station on Monday 9 May or Bromley High Street on Friday 13 May. Toby, our designer, is finalising some posters for the front windows to advertise the Big Cake Bake – he’s started seeing Cystic Fibrosis Week colours in his sleep – have a look at the website www.cfweek.org.uk as he is also uploading short video clips of our five faces of the week at the moment – they really show how inspirational people with CF live life to the full every day.

My family are all getting ready to do their bit for the week, Graham has a few more teams for his golf day now, he’s going to see how many donations he can get towards funding the helplines for a few hours, his plan is to buy a couple of rounds of beers, after a round of golf and then do the asking! Harry and Jay, as teenage boys, aren’t very good at fundraising (yet!) but they have loads of friends on Facebook so they are going to get all of their friends to like the CF Trust – all the awareness helps too! And Beth and I will be baking cakes galore, I’ll take some down to Bromley and the rest will go on the local stall – well if those teenage boys don’t get to them first…..

Look forward to hearing from you all soon!

Love

Nikki x

CF Week is fast approaching!

Oh No - it's only three weeks away!!

I went to send an email around the office to find out what all of the staff have planned for Cystic Fibrosis Week (8-14 May) and suddenly realised we only have seventeen sleeps until the 8 May! Slight panic was setting in, have we done enough, has everyone got everything they need, will anyone take part or will it just be me running around like a headless chicken trying to get donations from people!! But I shouldn't have worried - the CF Trust staff and of course our supporters are an amazing bunch and many of them have things planned, we've got, car boot sales in Cornwall, walks in Wigan, bucket collections in Bromley, skydives in Scotland - its great to know that everyone is supporting the campaign, throughout the charity and across the country. Even the CEO, Matthew Reed, is collecting at Victoria station on Monday 9 May, so feel free to pop along and say hello, or help out with a bucket for an hour or two.

The CF Week team would love to hear what you have planned - visit www.cfweek.org.uk or email cfweek@cftrust.org.uk with your stories. My family and friends are planning lots, I'm encouraging, not bullying, them into it! We have a bluebell walk on 8 May, golf day on 11 May and a cake bake on 14 May - something for everyone! Feel free to join us, all of the details are on our website.

The Samsa gang plus extras went down to the London marathon last weekend, how amazing to see so many people running to support all of our 220 Team CF runners. I was a terrible mother though, I have to confess. We had set off from home at 6:15 and we arrived at Tower Bridge at about 8am. Beth wanted something to eat so set off to the closest Starbucks, when she got back I realised I'd not got any Creon with me! What a disaster! Thankfully a lovely CF granny turned up to cheer on her family and had a pot in her bag - completely against all NHS guidelines I'm sure, but we did a drug swap at mile 12 of the marathon route! I left Graham, Harry, Jay, Beth and a crowd of friends and CF Trust staff cheering on until about 2pm when the course was being cleared and went on to the post run reception. Such an emotional day meeting so many runners including a few people with CF who completed the course. Totally inspiring! If you want to sign up next year the ballot opens on Tuesday, or join us cheering on - its quite hard work, your hands ache afterwards from all that clapping ;) !!

I've got an extra day off for the Easter weekend now, need to get some sleep in before Cystic Fibrosis Week arrives, keep me posted on your plans, as well as any hints and tips on how we can make things better for next year. This year may be the best yet, but that doesn't mean I can't learn how to make things better from all of you!!

Enjoy the sunshine whatever you have planned.

Love,

Nikki xxx

Avoiding hospital and getting ready to cheer!

Well there was me thinking we were heading for a couple of weeks at Hotel GOSH (Great Ormond Street Hospital) – just shows you that sometimes mum doesn’t know best! Beth’s lung function had dropped a bit over our past two outpatient visits and I was convinced that there must be something nasty lurking – she has never been productive before and is now managing to cough up some nice mucus (if there can be such a thing as nice mucus!) But the lovely CF nurse, Charlie, came out to see us and did all her usual checks and two weeks of oral antibiotics had sorted Beth out – lung function was back up to normal and no iv’s were necessary – hurrah! Here she is in the picture doing her lung function test.

It’s not only me and Beth that are delighted with this news (although we do enjoy the forced girly time, hospital isn’t the best way to spend the Easter holidays) the team at the CF Trust were pleased too. It certainly helps working for an understanding company when you have CF in the family – the unpredictability of the disease means that sometimes home life takes over, quite rapidly and without warning. I don’t think that the team were pleased that I, in particular, was going to be around – my bossy ways can be quite demanding – but leading up to a big campaign like CF Week is full on, for everybody and the more hands on deck the better. We have a lot of events happening at Head Office this year, it’s lovely to know that all of the CF Trust staff (not just the fundraising team) get involved in fundraising for families like ours, they are such a committed bunch of people. Have a look at the website to see more details of some of the events happening in Bromley (our Head Office) if you’re local feel free to pop in to the Big Cake Bake, we’d love to say hello! Or pop in with some recycling, a perfect way to get rid of your old rubbish while raising money for our favourite charity! If you want help organising a similar event of your own just give one of us a shout.

The family are busy working out plans for getting down to London on Marathon day (17 April) we’re cheering at mile 12, Tower Bridge, it was great fun last year and hopefully the weather will stay fine again this year, great for us, not so good for the runners! Harry, Jay and I will be on the early train, I have to bribe them with the promise of a bacon sarnie, Graham and Beth will follow on once all of the morning treatment is complete, mind you I reckon yelling at CF runners for a few hours must count as some physio! Maybe we’ll see some of you there.

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Speak soon,

Nikki x