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Macauley Tinston avatar
Macauley Tinston

Trekkers with Tekkers Volume. 2

We are raising money for Cystic Fibrosis Trust because we love to help worthwhile charities.

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  • Team members: Christian, Max, Cerys, Bobbie, Corey, Roksana, Libby, Matt, Lizzy, Antar.
  • Event: Trekkers with Tekkers, 04 Oct 2019

Cystic Fibrosis Trust

We work throughout the UK with one mission to beat cystic fibrosis for good

Charity Registration No. 1079049 (England and Wales) & SC040196 (Scotland)

Story

This year, Team Tekkers at Nationwide are taking on Kinder Scout, the tallest mountain in The Peak District, on 4th October in support of The Cystic Fibrosis Trust - we plan to continue fundraising throughout the year and beyond this event. 



This charity was kindly chosen by our Team, as it's something that is
probably too close to my heart. In September 1996, I was born and diagnosed
with Cystic Fibrosis, making me 1 of 2,500 in the U.K at the time. This wasn't
something that was well researched, so from a young age, I lived with the fear
of the unknown. I am exceptionally grateful for my fantastic support network
and to be honest I wouldn't be where I am today if it wasn't for them.

Over the last couple of years, I have worked with The Cystic Fibrosis Trust,
featuring in their Fighting for Breath Campaign, where I was on over 10,000
bus-stops across the U.K. Alongside this, I featured within the UKCFC (U.K.
Cystic Fibrosis Conference) booklet.

It's very tricky to describe how my health has been over the years, as this
is something that I can't control. If you could sit down and list all the bugs
that are common within Cystic Fibrosis, then I've probably had them all. I
currently have a 'Superbug' known as Non-tuberculosis myco-bacterium absessus
(NTM), this has got to be quite bad, so much so that they call it 'super'.
As soon as one bug leaves, I not so politely welcome the next!

I'd love to say that I'm healthy all the time, but I'm not. One day I'm not
so bad, the next I'm severely nauseous with a terrible cough. My health
fluctuates so much it's like a 'medical mood-swing'. Inconsistency is an
understatement. It's very difficult to look after yourself and somedays I
really can't be bothered or run out of time, but it's just something I have to
do. If I have an exacerbation, then I have an exacerbation.

I'd love to tell you how many tablets I take a day, but I've lost count
because it's just normal to me. I've never known any different, it's like
brushing your teeth, taking tablets becomes second nature. I take up to 40
tablets a day, 10 of which are antibiotics - they do make me tan
quicker, so it's important to cherish the perks I suppose!

I spend up to 2-3 hours a day on treatment, but somedays it can vary - hello
inconsistency again! To 'get it off my chest' I have to complete physiotherapy
and inhale 4-6 nebulisers all whilst making sure I remain active and live a
normal life, this is all exceptionally time-consuming and draining.

I spent my childhood under Paediatric Care at Northampton General Hospital,
until I turned 18 when I transitioned to Adult Care at Royal Papworth Hospital. Both
of these hospitals have been absolutely amazing and I couldn't have asked for
better care! It's charities like the CF Trust that allow hospitals like these
to keep up the brilliant work that they are doing to make my life and others
like mine that bit easier. 

Earlier this year, I had 3 months of intense IV therapy as an attempt to eradicate the bug NTM. This was a voluntary admission as advised by the CF Team at Papworth. Some of you may not understand this, but I really enjoy work, so it was really tough for me having to adjust my lifestyle, putting the things I wanted to do, on hold.

There is no cure for Cystic Fibrosis. We will always hope for the day that
one is found, but as of yet, we're still waiting. With the recent
introduction of Orkambi (lumacaftor and ivacaftor) the medical
enhancements just excite me more and more, however this isn't something that is
available on the NHS, simply due to its cost. When I was a baby, there wasn't
half of the treatments that there are now, can you imagine what can happen in
another 23 years?

Thank you for taking the time to read this, if you have any questions please
let me know. I've added some links if anyone would like to find out a little
more:


Fighting for Breath Campaign:  Check out the video of the
poster campaign production! 

https://www.cysticfibrosis.org.uk/get-involved/fundraising/join-our-fundraising-campaigns/fighting-for-breath


Orkambi: Find out more about Orkambi and the amazing potential it has
to help people like me!

https://www.cysticfibrosis.org.uk/the-work-we-do/campaigning-hard/stopping-the-clock/orkambi

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a life-limiting genetic condition affecting more
than 10,000 people across the UK. It affects the lungs and digestive system and
can cause chronic infections and reduced lung function. Currently, half of
those with CF will not live past age 41.The Cystic Fibrosis Trust is fighting
for a brighter future for people with CF and their families by funding
cutting-edge research, driving up standards of care and supporting people with
the condition and their loved ones every step of the way.



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