Leg 18 – 23rd July
Starting at Wooten Under Edge and Ending at Selsey
The Days Journey
Leg 18 12 mile 2400 feet
The wonder of it all.
Short one today but it allows me to be open with words.
This journey as we have said impacts you in so many ways most of us in one way or another come into contact with CF, but do we know we do? At first some 6 years ago I was, like most people, a little naive to the condition.
But unfortunately, the more we come into contact with people on this journey, the more we realise that it affects so many people, but until you raise the flag of CF, people tend to be insular, or is it graceful?
But stone me when the flag is up they come. The reason I write this is we have just had a 15 min chat with a lady who was a district nurse from Wales.She did her degree with an assignment on CF, she knew a lady who had lost a child to CF. So many times on this journey we have been stopped by total strangers who see, for example in Tesco car park the Motorhome and come and just give you £10 or £20 for the pot without discussion, without want without need for answers or anything in return, they must just know or have been involved with CF it tends to be an unspoken illness a slight air of well it’s slightly embarrassing because people won’t understand so it’s not worth talking about.
We as a group have raised the flag if you have only a £1 into the pot only taken a leaflet off us or committed to walking on Aug 11th or even searched Google for a question on CF you know what, we have done our bit, every min of every day we take a step forward to John O’Groats but is it just there where we are going or is it somewhere else, somewhere where we can chat openly about CF somewhere where it is not just waiting for a flag to be raised…… I am not educated enough to have the answers to that but we do have a Desire to raise that flag, would I have wanted to be involved with CF…… no but now we are here, the flag is going up at every possible location, pub camp site or steps where we eat our butties.
The more we talk the more we listen.
The above was written at lunch time today then this happened….
In a small area of Stroud called Stonehouse, we bumped into a lady, quiet unassuming lady who told us softly about her experience with CF, I won’t use names but it turns out she had lost her son to CF in his twenty’s her daughter has CF and is waiting for a lung transplant all this was told, with dignity, her daughter has just completed her degree, and lives every day with out compromise.
Her son lived and it seemed loved every day.
We listened we learned we spoke about our journey, now I have been lucky in life and I have had the chance to meet CEO’s been for drinks at Embassies, even met some royalty.
But hand on heart I have never been moved as I have today, if I never meet another soul iwill be content as I don’t feel I could have met a more warm genuine person who had so much to be sad about but was so positive.
We walked away very quiet in a bit of a daze, I made sure I was at least 10 feet in front of Ali………. mainly so she could not see me wiping the tears away.
This bloody walk, this wonderful, moving, life changing walk, it really has it all.
Onwards and upwards
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Todays Leg is 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”
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