Leg 60 – 14th September was dedicated to:
Thomas Joseph Taylor
A very special dedication today sent in by Steve’s son, Dominic…..
Our son Thomas Joseph Taylor was born on Christmas Day 2011 at Burnley general hospital, everyone was happy and all seemed fine until it was noticed Thomas couldn’t keep down his milk or open his bowels. I returned to the hospital on Boxing Day as the proudest dad in the world, on opening the door to the room where Louise (mummy) and Tom we’re supposed to be I was just greeted by Louise who informed me that T…homas had been transferred to intensive care. We were quickly rushed over to Manchester children’s hospital and a couple of major surgeries were under taken. Testing for CF was mentioned after the first surgery, our knowledge on this was very small and looking back I guess we didn’t want to believe it either. We kept our fingers and toes crossed for good results to come back. The next month was spent between ISC (intensive care unit) and HDU (high dependency unit) then back to a ward then back to ISC and HDU and so on and so on it was a rough time, and during this time we made a decision to have Thomas baptised. After three months a sweat test was taken and confirmed that Thomas had Cystic Fibrosis, after four months we left Manchester children’s hospital to all come home together to start our home family life. Thomas has picked up infections and had numerous periods in hospital, he always remains bright and cheerful and has a smile to melt any girls heart. I sometimes think he’s stronger than me – he is our little CF warrior. Thomas is now in Year 2 in primary school and in progressing in leaps and bounds. He has a wonderful caring family all around him who love him dearly. Thomas has become quite a pro on his little motorbike and pushbike and he also has numerous hobbies including swimming, jujitsu and playing out with his friends. We were as a family very naive to CF and it was a complete shock to find out the gene was carried by both sides of the family. Together as one we will fight to kick CF’s ass and give our boy a life beyond his wildest dreams.
My dad has always been an inspiration to me and I guess he is to many more now as well. We are all so proud of you grandad Ram. Love you loads dad.
Sending massive best wishes to you today Steve and knowing thoughts of Thomas will always drive you on xx
Leg 59 – 13th September was dedicated to:
Hi.. I have cystic fibrosis myself. I was diagnosed at 6 months old.. I then spent most if my childhood in hospital.. and over the years I also put on a bit of weight, well, I went up to 21 stone to be precise!
3 years ago I decided to do something about it and go against a lot of what I was told growing up. I changed my nutrition and took up fitness. I attacked fitness with a bang and in 9 months lost 9 and half stone. Since then I have become a fitness instructor and personal trainer.
I have had so many achievements in the last 3 years. But also to the point that I could do The Great North Run last weekend in aid of CF. I raised over £600 and am so pleased.
My aim is to inspire anyone with CF that we can live as normal a life as anyone else, but to enable me to inspire others I had to be inspired in the first place too and its people like you, Steve, that inspire me.. someone who’s willing to put themselves out there for an act of kindness that they didn’t have to do.. so for that, I thank you. Well done, buddy.
Leg 58 – 12th September was dedicated to:
Leg 57 – 11th September was dedicated to:
Leg 56 – 10th September was dedicated to:
Leg 55 – 9th September was dedicated to:
Our dedication for Leg 55 is the lovely Alicia …her grandmother Maureen Day sent us this message and fabulous picture ….
“I’ve just donated to your page Steve and am following you on FB. My granddaughter Alicia is a CF fighter.
She is doing well at present but has had numerous admissions to hospital from the age of three – she is 11 now starts big school in September. She has the voice of an angel and is very feisty. She sang to Simon Cowell as her Wish upon a Star charity treat when she was 9. She swims like a fish and her folks take care that she keeps fit taking her to the gym.
You’re a young granddad – I’m an old grandma and I so want a cure before I leave. I raise funds by selling jam and pickles at galas and fetes etc. I love her to bits and it hurts me to think about what’s up front for her if things don’t get moving on the research front.
On a lighter note hope the blisters are healing and just think about how fit you will be at the end of your journey. Take care and good luck Steve – to your team too.xx”
Maureen sent us this lovely picture of Alicia with a new elfin hair do at her end of school party….keep being a fighter Alicia and I know Steve will be thinking about you and all those with CF as he walks this Leg and focuses on completing his epic journey.
Leg 54 – 8th September was dedicated to:
Leg 53 – 7th September was dedicated to:
ALL CF Supporters running the Great North Run
We have a special message for all our amazing supporters who are taking on the mighty Great North Run this weekend – GOOD LUCK FROM TEAM CF!!!! We’ll see you at the finish line!
Leg 52 – 6 September was dedicated to:
Charles Michael Duke
Take a look at his FB page below – he’s recently had a double lung transplant and has been an ambassador for the CF Trust and campaigner for organ donation for a long time – remaining positive despite struggling with ill-health….I’ve followed Charles for a while on here and I’ve seen the videos and blogs he’s done too…sending all our best wishes to him and love and thanks for raising such awareness of Cystic Fibrosis.
Leg 51 – 5 September was dedicated to:
Rebecca’s dad Ian says these words:
Rebecca is now 19 and is responsible for her own treatment and medication. She is to start her second year at University in September. She plays hockey for the University team, enjoys park runs and ran the Fleetwood 10K last April raising money for CF. She’s working part time which subsidies her social nights out.
She sometimes coughs herself to sleep but has never complained. (I can hear her coughing now). Rebecca is pushing herself to enjoy life. She is a credit to all, both with and without CF. Well done girl.
Carry on living and loving life Rebecca …we are all in admiration of those of you who battle this cruel condition everyday without complaint…Steve is walking this leg for you x
Leg 50 – 4 September was dedicated to:
Alizon Taylor - Lamb
Leg 49 – 2 September was dedicated to:
Leg 48 – Loch Lomand to Bridge of Orchy was dedicated to:
Leg 47 Cashel to Loch Lomond was dedicated to:
Our CF Warrior today is the lovely Millie and her mum Zara Guest sent us this message to tell us about her brave daughter…
“Here’s my story. Our daughter Millie was diagnosed with cf at 2 weeks old through the heel prick test. Myself and my partner knew very little about cf and unaware that we were carriers. As any parent would do, I did some research which was the worst possible thing we could have done and filled us with heartbreak. Thankfully Millie has been in good health since birth with no cf related illnesses and doesn’t need any medication at the moment. We take each day as it comes and seek advice as and when we need to rather than research too much as every child is different. Last year our family and friends walked 25 miles and we raised £1500 for the cf trust. This year we did a tandem para-glide from a mountain in Turkey and raised £500. Good luck to you on your challenge and thank you…..here are a few pictures of our fundraising and our little girl Millie x”
Sending our best wishes to Millie to keep well and keep on fundraising – together we will see off CF!
Leg 46 – 30 August was dedicated to:
Leg 45 – 28th August was dedicated to:
Mum Andrea is a big supporter of both Walking4CF and Running4CF and works tirelessly, as all CF parents do, ensuring Sophie keeps well. Andrea sent us this message and lovely photo of Sophie with her dog Mist….
Living with Cystic Fibrosis is a daily challenge, which Sophie takes on. She is a fit 12 year old who is thriving at school in all aspects. She works hard in her lessons and loves PE.
She is a regular in the Lakes tree trekking on the high ropes course and loves to feel the freedom from the zip line at the end. She also really enjoys swimming, and her ambition is to swim a length underwater; she loves to cycle too! She embraces her life and loves everyday. Thank you Steven for doing this…… all us CF-ers are truly grateful to you and sending you good luck. The Holgates xx
Today is Sophie’s sister, Millie’s, birthday so especially wanted this date to be her dedication…..Happy Birthday to Millie from all at W4CF, take care and keep well Sophie, and stay strong Andrea – you do an amazing job x
Leg 44 – Livingstone to Falkirk Wheel was dedicated to:
Leg 43 – West Linton to Livingstone was dedicated to:
Today’s dedication is for Laura Irvine – a beautiful young woman who sadly passed away in 2014. Laura’s cousin Nadia George sent us this lovely message…”
“In 2014 our families lives changed forever, we lost our beautiful Laura, my cousin, at the young age of 31. She was diagnosed with CF as a baby and numerous times we expected the worst after admissions to hospital but she never gave up and fought hard.
She was such an inspiration, there was only a year between us and she lived life to the full, I sat moaning about trivial stuff while she bravely fought on and lived each day to the max!
She missed out on so many nights out and family get together’s, but when she was there, she was the life and soul of every party.
I really can’t put into words what I thought of her and the many people that were lucky enough to have her in their lives. Her memory will live on forever and I will continue to raise as much as possible for the Cystic Fibrosis Trust .
This year I will be running the Great North Run with my cousin and my other cousins partner, we’ re not runners and never have been but we feel if she could go through what she did every day then this is the least we can do in her memory!
Good luck Grandad Steve with your journey, I’m sure you will make Thomas very proud.”
Laura’s family are having a party today to celebrate Nadia’s wedding so the date was special for them to dedicate to Laura too….a dedication like this makes CF very real and Steve’s challenge and the awareness it’s raising all the more important. Thank you so much for sharing your story and letting us celebrate Laura’s life with you – have a wonderful day and good luck in the Great North Run – we’ll certainly be cheering you on x
Leg 42 – Peebles to West Linton was dedicated to:
Leg 41 – 22 August was dedicated to:
The inspiration behind today’s dedication is teaching assistant Ellie Dunstall who also wanted to educate the children on CF. See her video below which formed part of CF week organised by The Trust in July.
Leg 40 – 21 August was dedicated to:
Leg 39 – 20th August was dedicated to:
Leg 38 – 17th August was dedicated to:
Leg 37 – 16th August was dedicated to:
Jenson’s mum, Jessica, sent us this lovely message….
I really don’t give my big lad enough credit. The amount of vile medicines he has to have every day, antibiotics, enzymes, vitamins and then on top of the meds he does his physio, whether it be physical patting on his lungs or breathing exercises into a tube. He’s done it from day one and I’ve never had to fight him (except sometimes for physio!) He just takes it all in his stride.
If there was one thing I was put on this earth for it was to look after this little boy of mine, he amazes me every day the amount of energy he has for a child with his condition. He’s had to fight and will do every day of his life but I know one thing, he will not be beaten, especially with his mamma by his side.
I’ll do everything in my power to make sure of that! I pray that one day we’ll wake up to news there’s a cure, until then all we can do is HOPE! Don’t know where I would honestly be without my little Jenson James, he makes me as strong as I am! The first picture is when he was really poorly in the beginning and the second picture is him now, he’s come on leaps and bounds!”
Leg 36 – 15th August was dedicated to:
Natasha McIntyre, mum of Amélie
See the fabulous article on the Toddle4cf we mentioned yesterday – many thanks to mum of Amélie, Natasha McIntyre, who Steve dedicated Leg 35 to, for organising the event and for mentioning Walking4CF!
Leg 35 – 14th August was dedicated to:
Leg 34 – 13th August was dedicated to:
The message below is from Amélie’s mum, Natasha.
I just wanted to share my thanks for what you’re doing at the moment and wish you well on your way.
This is our daughter, Amélie. She was diagnosed with CF at three and a half weeks old, which came as a total shock to our family, as we weren’t aware that we were carriers.… Amélie’s daddy had never really heard of CF and my experience was my school-friend, Vic, who was a CF sufferer (she died aged 23). I remember her having a vast array of tablets to take at school and often attending with an iv in her hand. Thankfully, treatment has moved on and Amélie has been relatively healthy, although she developed pseudomonas three days before her brother was born and two weeks after her 2nd birthday.
It’s been a tough year but I’m inspired by Amélie’s bravery every day. We now have 2 months until the all clear of pseudomonas, fingers crossed! Once again, good luck with your walk and thank you for raising money for a most worthy cause.
Since Natasha wrote this she has been in touch and Amélie has been given the all clear from pseudomonas – fabulous news.
Also today in recognition of the dedication Natasha has organised a Toddle4CF event – just such a lovely idea, and we will hopefully share some photographs and an update of how it went in a day or 2.
Leg 31 – 11th August was dedicated to:
All parents and siblings of those with CF - the sometimes forgotten heroes....
Today we have a special dedication – to all the families, parents and siblings of those with Cystic Fibrosis…and to say thanks to them for all that they do and to recognise it’s hard for them too – seeing someone you love struggle with such a debilitating, life limiting illness like CF is heartbreaking….here are a couple of messages from 2 mothers of CF sufferers…..
Andrea, mother of Sophie …”When we brought our beautiful angel home from hospital, little would we realise what life was to throw at us. Sophie was diagnosed with CF at 8 1/2 months old and our lives were turned upside down over night. CF is a daily battle, every day we get up and grab it by the horns and control it with tablets, inhalers, nebulisers, physio, exercise special diet and iv antibiotics. The pressure it puts on the child in question the family and their siblings is so much. Time is taken away from other family members with all the time CF takes. Every day we do this battle but one day we hope we will get up and our battle will be over and we will have won.
THANK YOU FOR ALL YOUR SUPPORT.”
Samantha, mother of Amelia….”I have two daughters one with Cystic Fibrosis and the other not even a carrier… and we work hard to make sure the only difference is CF. Sometimes it’s tough but we are a strong family and have loads of fun and laughs …and of course plenty of fall outs like any other family! Thanks for recognising other family members today – it means a lot”
See the attached video clip made by The Cystic Fibrosis Trust giving siblings the opportunity to chat and ask questions about CF – and if any other families or friends or CF sufferers want to post comments below please do ….Leg 31 is for you all xx
Leg 33 – 9th August was dedicated to:
Leg 32 – 8th August was dedicated to:
Rachel, Jack’s mum, sent us this lovely positive message…
Jack has a keen interest in Karting and it’s clear to see when recently he scooped 2nd place at the Teesside Sprint Championships despite only two weeks before getting the all clear from pseudomonas!
Jack has come on leaps and bounds since taking on the hobby of karting, sporting number 65 with pride he raises awareness of Cystic Fibrosis while having a whole lot of fun at the same time.
The difference in his health has been identified by his medical team and he’s also recently been noticed by a great karting team so it’s looking really good for him. He does his medication at the track making sure nothing gets in his way and we’re all so proud of him!
Leg 30 – 7th August was dedicated to:
Leg 29 – 6th August was dedicated to:
All those living with CF
Leg 28 – 5th August was dedicated to:
Charlie’s mum Michelle sent us this photograph and message …..
I would like to dedicate a day to my little boy Charlie because he just amazes me every day at how well he just gets on with everything to do with CF. His strength and courage is amazing too.
Obviously he has his off days where he says he hates having CF, luckily those days don’t happen too often and because of him I’ve become a keen fundraiser for the Cystic Fibrosis Trust, I need to help them find a cure as Charlie and all CF sufferer’s deserve to live a life unlimited.
Leg 27 – 4th August was dedicated to:
Everyone who is helping
Huge thanks to Denise Park Physiotherapy Clinic for looking after Steve and Alizon is proving to be his rock….it’s plain to see he can’t do this alone….so from us THANKYOU for all your support. This time next week 132 of you will be Walking4cf and joining Steve on the @Walk/Run4CF Dales Way 22/50K Ultra raising awareness and funds for Cystic Fibrosis…….it’s All Going on
Leg 26 – 2nd August was dedicated to:
Leg 25 – 1st August was dedicated to:
His mum Nadine sent us this message and lovely picture of Elliot….
I would like to dedicate a day to my gorgeous little superhero Elliot who is fighting CF every day.
Elliot is only 4 years old and battles his illness better than I ever could – taking up to 10 pills in one go (I retch with 1!).
He’s full of energy, determination and ‘cheek’ – he knows what he wants and doesn’t stop until he gets it which helps when we task him with an obstacle course of running, trampolining and bubble blowing as part of his physio.
Elliot has supported all of our fundraising for the CF Trust by always being at the centre of the events we’ve held along with his big brother Dominic and both are running the mini GNR again this year.
Good luck at the Great North Run to Elliot and Dominic – you’ll do brilliantly!
Leg 24 – 31st July was dedicated to:
Everyone walking Leg 31
We don’t have a dedication today but Liam McHugh who is an ambassador for The Cystic Fibrosis Trust and who’s daughter Rachel was our dedication on Leg 2 sent this message for Leg 31 a while ago but as it’s fast approaching I thought would be good time to share it…..thanks so much for your support Liam.
Samantha and I have hit the Big 50 and feel happy and healthy and looking forward to walking the distance (but for info we won’t be doing 60k in a decade from now 😬) Gx
Leg 23 – 30th July was dedicated to:
I would love to dedicate a day to my strong amazing beautiful daughter Keeley Louise Bradley. Not only does she never give up fighting despite endless hospital admissions and drops in lung function she continues to push herself daily.… She ran last year’s junior great north run on intravenous antibiotics and completed the race in 29 minutes.
She has recently taken part in her first judo competition and got a bronze medal. She makes her dad and I very proud of her and she is an inspiration to us all.
She loves to represent The Cystic Fibrosis Trust at any events she has been asked to attend or telling her story for fundraising opportunities.
Leg 22 – 29th July was dedicated to:
“Hope that the weather isn’t dampening spirits too much today! Just thought I’d send a couple of photos of Amélie celebrating finishing her Pseudomonas treatment (her syringe boxes were as tall as her) and having her final nebuliser at the hospital to check it had gone in December.
We have 5 weeks to go until she’s officially… clear.
Pseudomonas is quite serious for a CF sufferer and because Amélie looks healthy people, don’t always realise how much of a worry it is for parents; the phone call to say she’d grown it last year was so crushing for us.
On the day you are dedicating to Amélie (13th August) we are going to organise a Toddle4CF and will hopefully get others involved, I’ll send you all the details as soon as I have them.
It’s clinic day for us tomorrow and hopefully our last ‘growers clinic’ for now at least”
Leg 21 – 28th July was dedicated to:
“My name is Victoria Martin. In a few weeks I’ll be 40 years old and this is my experience of living with CF.
I was born prematurely and I spent many weeks in a loca…l hospital for failure to thrive until I was six months old when I was diagnosed with CF. After being diagnosed I began attending the regional centre for CF in the RVI in Newcastle.
I also hated taking the medication which meant I had to have the medication enzymes sprinkled on my food and my parents had to use MCT oil for cooking. I had a very strict diet until my parents attended a seminar held by a consultant from Canada where they learned that I could eat what I wanted to and just take extra pills. This made the CF easier to live with as I began my teenage years.
As a preteen I was very well tested which confirmed it was definitely CF. It was discovered that I had inherited a very mild mutation of the gene from both parents which is quite rare. As I moved into my teenage years I continued to have problems taking my tablets which lead to my mother refusing to give me the medication and the doctor discontinuing it as long as I did not get any worse.
When I was old enough I was transferred to the adult clinic which I have been required to attend every three to four months since to ensure I remain fit. Over the last forty years I have looked back and realise how lucky I am to be so well, as others have not been so lucky.
Thank you so much for doing this walk in aid of Cystic Fibrosis Steve which is raising money and awareness. And also thank you for allowing me to share my story. All the best for the rest of the walk. You can do it!!! Thanks”
Leg 20 – 25th July was dedicated to:
Leg 19 – 24th July was dedicated to:
Leg 18 – 23rd July was dedicated to:
Today’s walk is dedicated to 13 year old Hollie Williams and her mum Angie sent us her daughters story here
“Hollie was born on 5th January 2005 by cesarean at 10am morning – she seemed a beautiful healthy baby weighing 6lb 2oz. From day one Holly was unfortunately quite sickly but on her 2nd day we realised our world was about to change forever. She was quite seriously ill in neonatal and we didn’t sleep and stayed in a room nearby.
Hollie was then transferred to another hospital and later that day in intensive care doctors said she needed surgery to unblock her bowels – she was only 5 days old. Again at 10 days she became unwell and my precious baby’s life was in the balance and she was diagnosed with Cystic Fibrosis along with having a stoma fitted – Hollies a fighter ….she once stopped breathing and my husband saved her….after that we had few close calls; she grew pseudomonus at 5 weeks and has continued to suffer from this on and off along with other infections. She’s struggled with long lines because her veins have collapsed and aged 7 mths she had her stoma reversed, thankfully.
Aged 18 months Hollie got 5 different viruses and we ended up on ivs yet again watching her battle infection -after 7 days she opened her eyes and said I’m hungry mam – the joy! Hollie has liver changes along with lung problems as she has a rare CF gene plus meconium ilious at birth and now has a portacath – much kinder for Hollie and the best thing we have ever done.
Hollie had a really rough time with pseudo monusgrower aspergillus and other bugs and has to take lots of medication, but despite everything she’s a top student at school, she sings, plays bass guitar and the ukalalie – she’s very musically minded and sang in School of Rock. Thankfully her brother Thomas doesn’t have CF – we had him tested birth. After Hollie was born we fought a legal battle and I asked for all children born in the UK to be tested for Cystic Fibrosis – it was passed in 2006.
Hollie has done a lot of charity work over the years; I’m so proud of my daughter – she’s fought against all the odds xxx”
Leg 17 – 21st July was dedicated to:
Tim is an inspiration for of a lot of CF sufferers – see the message he has sent to Steve below along with the link here to a book he has written. For more information and links to Tim’s blog please visit https://timwotton.wordpress.com/
Tim’s supporting video – YouTube link
Leg 16 – 20th July was dedicated to:
Leg 15 – 19th July was dedicated to:
His mum Jen sent us this lovely message …..
This is Lorcán, he is 18 months old and has Cystic Fibrosis. Lorcán means ‘Little Fierce One’, and he certainly is! He loves to be active and to be outside.
He has just learnt how to take his tablets whole with only a sip of water, we clap each time he does it and so does he!
Taking around 20 tablets a day means a lot of clapping! We are desperate for Lorcán to stay well and can’t imagine a future where CF means he isn’t able to run around laughing and having fun.
We are so grateful for those walking to raise money and to those who donate, thank you so much.
Leg 14 – 18th July was dedicated to:
Leg 13 – 17th July was dedicated to:
Everybody behind the scenes making it happen! Thank you !
Leg 12 – 16th July was dedicated to:
At only 16, Alissia put together Team Evolve to take part in the Yorkshire Warrior challenge on our behalf raising a whopping £849.11 and here’s what she said…
“The reason I chose to try and raise money for The CF Trust is because I’m actually a sufferer myself. Even though I’m only 16, I’ve managed to get the whole of Team Evolve in on raising as much money as we can for this important cause!! CF has had a large impact on my life as well as my family’s, however, I understand even more so how hard it can be for others.
My CF means that I am pancreatic sufficient, therefore I don’t need to take enzymes and other medication that other CF sufferers might have to take. I’m very well in myself and have been training hard. I’m so lucky to have such a good support network around me from my family, friends and Team Evolve.”
Stay well, Alissia, and thank you.
Leg 11 – 14th July was dedicated to:
Leg 10 – 13th July was dedicated to:
My name is Esme Ives and I am 10months old. I was diagnosed with c.f. when I was 14days old, my parents had no idea they were carriers. My c.f. includes pancreatic insufficiency so I have creon with all fatty foods along with daily anti biotics, vitamins and physio.
So far I have been fairly healthy and have only been admitted once at 8weeks old for 4 days. I have also had 3 1 day visits but mana…ged to escape with more medication as my parents could manage at home.
I have an older sister who is nearly 3 and she likes to try and help with my medication. I love learning from her and watching her play.
My Mummy and Auntie Lou Lou are taking part in the virtual walk to support Steve (Sisters for Cystic Fibrosis) and my family are arranging a CF fundraising day in July as well.
I like swimming, eating (lots), bouncing and am a Daddy’s Little Girl.
I hope the money raised really helps The Cystic Fibrosis Trust so I can lead a healthy life and myself and my family continue to be supported by them.
Good luck Steve and team
Thanks so much to Esme’s mum and Auntie for joining in The Virtual Challenge to support Steve’s LEJOG ….if you can’t join us on Leg 31 it’s the perfect way to get involved visit https://www.cysticfibrosis.org.uk/…/e…/great-strides-virtual for more details (and please send us your photos!)
Leg 9 – 11th July was dedicated to:
Libby Fae Dean
Today’s dedication in Libby Fae Dean 😀……Libby’s step-mum sent us this lovely message.
“I would love to dedicate a day to my beautiful step daughter Libby Fae Dean. Her pure strength and determination in fighting this cruel disease amazes me. Libby never complains, has the most amazing smile and zest for life. Last year she completed the Great North Strides 5 mile walk along Hadrian’s wall and raised £1,422.50 for CF trust.”
Today Stephen will be walking and thinking of you Libby!
Leg 8 – 10th July was dedicated to:
We don’t have a dedication today so I’m going to dedicate it to Alizon Taylor – Stephen’s wonderful wife who’s currently walking each step so far with him, and I have no doubt being his rock and his key supporter.
Many, many thanks to you too, Alizon – we know you’ll be making a massive difference
Leg 7 – 9th July was dedicated to:
Scarlett’s mum sent us this….
“Scarlett was diagnosed at 5 days old. As a family, we were devastated and for a while, CF and thoughts of the future took over our lives completely.
But as time went on, Scarlett showed us just how tough she was. Her strength gave us strength and no matter what challenges face her, no matter how poorly she gets, she never stops smiling.
Daily life at first was tough. Medications, physio, hospital visits and home visits. CF was all we thought about for the first few months. But now, we do what we need to do every day with treatments, then live everyday together, with CF no longer in the front of our minds.
We are all so proud of how well Scarlett does. She is forever showing cf exactly who is boss. Scarlett has an incredible team behind her, at hospital and in our community.
Every year our community ‘Stands with Scarlett’ by turning the whole village yellow raising money for the Trust and so far within the last two years we’ve raised £6278.21.
We’re already looking forward to our third ‘Turn Crawcrook yellow’ event we have planned for 2018”
Leg 6 – 7th July was dedicated to:
My name is Molly-Mae, I am 9 years old and I have Cystic Fibrosis and here is my story of when I met my friend Ethel.
I hope my story helps other child…ren like me.
The day my Mummy and Daddy told me I was going to have a Portacath fitted I felt very nervous because I didn’t know what a Portacath was at first. My Mummy and Daddy explained to me how it was the best thing for me and would be easier for when I needed intravenous antibiotics and could even have my bloods taken from my portacath. I was still a little scared and really wanted to speak with my Cystic Fibrosis Team as I had lots and lots of questions to ask!
I chose to call my Portacath Ethel Port as I like the name Ethel… don’t ask why I just think it’s funny!
I decided I wanted to meet Ethel Port, so I asked to meet with my nurse to meet Ethel Port and to ask lots and lots of questions. I felt so much happier when I met her. She was a bit bigger then I thought but I didn’t feel as scared anymore. She was made of Titanium, I found it so funny as I would set off the alarms at the airports when I go on my holidays, I even thought I would have to go through the scanning machines where your luggage normally goes!
The day arrived when I was to have Ethel Port fitted there was a few days in hospital before the operation but I had lots of fun and had plenty of things to do. The nurses and doctors were so lovely. The play leaders brought me a Nintendo DS to play with and I did lots of painting because sometimes hospitals can be so boring at times.
Finally, I was ready to go to theatre in an unfashionable hospital gown! Whoever designed them doesn’t have any fashion sense! I did ask what shows were on at the Theatre but no Mary Poppins this time just “Ethel Port’s Musical”.
I was taken to theatre by a very funny porter who made me laugh all the way. I was then put to sleep and before I knew it I was awake and Ethel Port had been fitted.
So, Ethel Port then became my friend I think of her this way as she’s there to help me when I need IV’s and my bloods taken. She goes everywhere with me (it would be a bit difficult if she didn’t!), she had her first day at school (luckily she’s in the same group as me), her first bath, her first swim, her first sleep in my bed, her first haircut with me and she has met all my friends and family now. She’s got so many exciting adventures to have with me and I know she’ll love them all.
I don’t like to think of my port as a nuisance to me as I like to think of her as a friend for life as she is just part of me now and part of who I am and nothing will stop me living my life to the max!
Leg 5 – 6th July was dedicated to:
Leg 4 – 5th July was dedicated to:
Zona Barajas Armstrong
Today’s dedication is for Zona Barajas Armstrong …here’s Zona’s mum, Ariyan’s, tribute to her daughter….
I’d like to dedicate a day to my daughter Zona. Zona was a healthy CF child until about 2 years ago when she got pseudomonas, then aspergillosis and last November started treatment for non-Tuberculosis micro bacteria.
One day she hopes to be a nurse or a doctor so she can be like her heroes at the Royal Hospital for Sick Children in Belfast where she attends.
Thank you so much for giving me a chance to tell Zonas CF journey. We wish Steve all the best and will follow his journey as well as keep Zona’s page updated on his adventure once he sets off .
Leg 3 – 3rd July was dedicated to:
Leg 2 – 2nd July was dedicated to:
Today’s dedication is for Rachel McHugh whose father Liam is an Ambassador for the Cystic Fibrosis Trust and dedicates his life to raising funds and awareness; he’s particularly central to the fight for Orkambi being available to all. This is what Liam has to say …..
My name is Liam McHugh and my wife Eleanor and myself have our only child Rachel with CF aged 26. When she was diagnosed back then life expectancy was around 16 years of age. It’s been a tough daily battle but Rachel who has been on the drug Orkambi for nearly five years is doing great. She has a Degree, Masters and at the end of this year she will be Dr. Rachel McHugh in Psychology. We are very proud of her. This wouldn’t be possible without the vital funds raised over the years to help beat CF for good. That’s why it’s still so important today to keep the fundraising going. Rachel lives life to the full and always has a smile on her face. Life expectancy is rising and soon we want to say everyone with cf will live a life unlimited
Leg 1 – 1st July was dedicated to:
My name is Amelia Dickinson, I’m 17 and I was diagnosed with Cystic Fibrosis at 3 months.
I was in hospital for almost a month with pneumonia and my parents told me I nearly died. Life with CF isn’t easy and I’m so grateful to my mum, dad and sister Ella for helping to keep me well. I have to have regular two week courses of strong medication through I.V’s which used to be given to me through a ‘long line’, which wasn’t easy, and eventually my veins began to fail. I had surgery to fit a portacath. I was really scared at the time, but it has turned out to be one of the best things that I have done, it has changed my life as my I.V’s are much easier and painless these days. For the past 3 ½ years I’ve had a struggle with my lung function and my lung capacity is at around 32%. It was lower, but I’ve battled back! It needs to be above 42% so I need to talk to the Lung Transplant team – this doesn’t mean that I need a transplant, it just means I’m on the radar and they’ll look after me.
Since I started secondary school I realised I was different. I couldn’t just run out of the door in the morning to rush to school like my friends. My morning routine like other CF sufferers includes: 5 puffs of my Ventolin inhaler, insulin, eat 1000 calories worth of food, inhale saline solution through an ineb nebulizer, physio to clear mucus from my lungs, inhale antibiotics through an Ineb, 2 flucloxacillin tablets, hayfever tablet, slow sodium tablet, anti-sick tablet and a reflux tablet! This is just the morning. I need lots of extra food and snacks throughout the day (around 3000 calories) and more physio if I’m not feeling 100% so that I can clear my lungs. I have to repeat all of this in the evening too and take extra vitamins. It sounds like a lot? ….. it is. Like all CF sufferers it does get me down sometimes, but I’m determined to keep well and still enjoy life…..treatment for CF is improving thanks to the science and research that is advancing all the time and I’m optimistic for the future. On behalf of all of us with CF I want to send a massive thank you to Steve for the challenge he is doing to raise awareness and funds to fight Cystic Fibrosis – and on this, his first day, wish him all the luck in the world from us all …it means a lot …Amelia Dickinson xx