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LIVING WITH CYSTIC FIBROSIS


Sophia, 4

Aidan, 5

Mary, 11

Grace, 12

Hugh, 19

Amanda, 27

Ben, 32

Rachel, 33

Richard, 37

SOPHIA – 4
I’m in my final year of nursery school now and will start proper school after the summer.   When I’m not running around with my friends from nursery, then I’m playing football or doing gymnastics or learning how to swim.   I also love zooming around on my micro-scooter or chasing after my little sister.  I take quite a lot of pills and liquid medicines with every meal, and twice a day my mummy and daddy do physiotherapy with me.  I also use a nebuliser twice a day for 15 minutes.   I don’t mind though because I’m allowed to watch my favourite TV shows during this time, and I love watching Peppa Pig or Ben & Holly.  When I was six months old I had a stay in hospital for a bronchoscopy, but now I only go to the hospital every eight weeks or so for a check-up.  Luckily I’ve been fairly well except for a few nasty colds and infections but I would rather not have CF!  Please help us find a cure!

AIDAN – 5
Hello, I’m Aidan, I am nearly six and I have cystic fibrosis, diagnosed at 10 days old.
The last two years have been life changing for me, I have started school, learned to ski and got a sister.  Thankfully I love them all.
In terms of my illness I do three nebulisers a day, one to thin my mucus and the other an antibiotic to kill off a superbug that has been growing in my lungs.  I take about 20-25 tablets a day to help me absorb my food.  Compared to my sister I don’t have much of an appetite so poor Mum always has to push me to eat so I grow up to be a big boy.  I blow into a machine twice a day for part of my phsyio routine and take a horrible powder in orange squash to help me go to the toilet more easily, as I can get terrible pains otherwise.  These have been so bad that I told my Mummy and Daddy that if I were dead I would not get my tummy pains any more.
I am very good at doing everything the doctors tell me to do and that has kept me out of hospital which is fantastic.  I hate missing school.  It’s just so unfair I have to do so much day in day out, I hate my machines and treatments, my sister does not have to do them.
Please help find a cure for cystic fibrosis.

MARY – 11
Hi, I’m Mary.  I’m 11 years old. I was recently asked to design the logo for the 2015 ball which was quite exciting!! I love anything creative which includes dance, art and music! So being asked to design the rose was just amazing!!  I recently started secondary school and wanted to keep my CF quiet.  However, I have realised that the more people who know, the more likely we are to find a cure! I have recently been diagnosed with pseudomonas which is annoying to myself and my family.  This basically means I’ve got to do extra physio and nebulisers, along with more antibiotics. Its a drag but it’s important to remain well so I manage! I’ve agreed to take part in a clinical trial (because of pseudomonas), which I feel is doing my bit towards the future in CF care. Please help CF and lets hope the future is bright for all of us!! :-)

GRACE – 12
Hi, I’m Grace and I’m 12 years old. At the moment I have a pretty bad cough and I’m on nine nebulisers a day – a mixture of anti-biotics, mucus thinning medicine, saline and something to open up my airways. Plus there’s physio’ and it takes up a lot of time which is difficult because I’m very busy!! I’m in drama club, Ukele orchestra, Drumming Club and play the oboe and the piano. But my big thing is running. I recently came third in the Greenwich Schools Cross-Country Championships and represented Tower Hamlets in the London Mini Marathon. The running helps clear my lungs so it’s really extra treatment as well as being fun (quite)! My mum tells me each nebuliser took about half an hour when I was a baby. Now they take five minutes. So treatments have really improved thanks to generous supporters like you. Please keep it up because I’m aiming to beat my dad on the Park Run and need time to train!

HUGH – 19
Since the last ball I have now finished school!  After leaving with the A Levels I wanted and admissions were also reducing – I was transferring to Kings. I was able to go traveling for 3 weeks around Europe before starting the next chapter in my life – University.
The first year of uni life has drawn to a close after completing my Art Foundation course. Getting used to taking full responsibility for my health and life in general was a big step at first with an increase in admissions again but have started to spread apart a bit more now.
As well as learning more over the last year than I ever had wanted to at school the foundation was a great stepping stone to a new lifestyle and has motivated me to look after my health more and more, and after launching my first website I cannot wait to dive into the next 3 years of uni to study Graphic and Media Design and look forward to the challenges that lie ahead of me over the coming years.

AMANDA – 27
It appears that in the last 2 years, I have done more than I thought!
Ten months after my double lung transplant, I competed in the British Transplant Games, gaining a gold, silver and bronze medal in archery, tennis, and the 3km run respectively.  The level of fitness that I achieved was really training to get back to playing hockey again, which is what I did, joining Brighton and Hove Hockey Club in September 2013, after a three year break from the sport.
As a light hearted diversion, I and some friends also produced and featured in a nude charity calendar in aid of the Cystic Fibrosis Trust, raising £1,600!
My new lease on life was reinforced when I signed up to run the 2014 Brighton Marathon, something that I had previously signed up to before my lungs deteriorated to the point of needing a transplant; now that I had no excuse this was my next challenge.  Along with six other friends, we completed the marathon, raising over an awesome £13,000 for the Trust.  It was an amazing day, and one that, at one stage before my transplant, I thought I never would have seen.
I am now working towards my next challenge -  “Climbing for my donor”.  A group of 15 heart and/or lung transplantees along with some doctors and our team guide, are going to Ecuador this summer to climb in the Andes with the aim of reaching the summit of Cotopaxi.  Cotopaxi stands just higher than Kilimanjaro, and it is thought it will be a world record if any of the lung transplantees reach the summit.  Five of the 15 going have Cystic Fibrosis; all having had different experiences of it and the transplant process, but all are wanting to show that even though having CF, and a transplant, there is so much to achieve.
To find out more about the team going please visit www.climbingformydonor.co.uk and do wish us luck!

BEN – 32
I’ve been fairly well over the last few years so the key for me at the moment is keeping my health stable.  I swim 3 times a week which has improved my lung function significantly from where it was a few years ago and helps keep infections at bay.  I work 3 days a week which gives me enough time to keep myself well, so hopefully I can keep going in the right direction until the new medicines like ivacaftor/lumacaftor become available, assuming they are approved.  The hope then would be that I can add another few vital percentage points to my lung function.  Two to three percent might not sound like much but it can be the difference between walking down the street normally or wheezing and coughing every few metres.  So there are lots of what ifs and maybes but I’m thinking positively, hoping everything will continue to slowly improve!

RACHEL – 33
Well as you can see from the photo, I am now a married woman.   After 8 years together Adam asked me to marry him…..that was in February 2012 and we tied the knot on 27 October, a day when the sun actually shone!  It was needless to say, the best day of my life.  Most of my friends are married and I thought my turn might never come.  The day was full of so much love and joy.  The party, well that finally finished at about 3.30 am!
So since the last Ball we bought a house in Balham, which needed a total renovation, and aquired Otto, the sweetest miniature wired haired dashund ever.   It is great having a dog, it encourages me to get out and walk every day.  I now work for a friend who owns a small business making bespoke curtains and blinds.  I love to be creative and this job fits around my daily CF therapy, something which I NEVER miss.  I feel so determined to keep as well as possible for the time when that cure is here.  I do feel there is tremendous hope, even for me at my age.
So thank you from the bottom of my heart for being there tonight and supporting the CF Trust.

RICHARD – 38
It seems such a long time since my last update but life is still treating me well.  I have changed employers and am now working in the Business School at the University of Exeter. It’s a great place to work and has superb fitness facilities which is a great advantage for me.  I play football once a week and have started tennis lessons and even though my health does get in the way at times when I am feeling unwell, I do try to go most weeks. I’m not exactly the Pele of the football field but I do have moments of brilliance (generally by accident) when I tell myself that if I had the time to train I could have been a professional footballer!
My health overall has been ok but I seem to be having longer stints of being unwell that in previous years and the doctors have become less sure about what will work and have resorted to trying things until I feel better. Whilst frustrating at times, you just have to keep going as what other choice do you have?  Things for me thankfully do get better eventually.  I am nearing the golden age of 40 (39 this year) and will become one of the 50% to reach this milestone.  It seems a bit surreal at times but with the advances in medicine I am hopeful that CF will be beaten, so I can live well into my later years… my wife says she is looking to trade me in for a younger model at some point, so I am looking to disappoint her!
In the meantime I couldn’t ask for better care or support from my CF team, family and friends, who make my life so much easier.
Thank you so much for supporting the CF Trust and I hope you have a wonderful evening at the Sixty Five Roses Ball :-)