ORKAMBI NOW.

we have used over 10,000 syringes in 18 Months to provide water, medicines and enzymes 💉

over 1100 nebulised treatments totalling around just over 13 days of stanleys life. 💊

in just 18 months we have had around 10 admissions to hospitals. 🏥

15 cf clinic appointments. 👶🏼

3 X-rays, 1 ecg, 1 contrast test, blood sugar testing, and more blood tests than I would like to count.. swabs in his nose and at the back of his throat forcing him to cough every time we see a member of the cf team. 😷

Over 100 attempts at cannulas, long lines and finally a port which means having a needle into his chest every four weeks even if not being used to flush it preventing clots. 💉

A peg feeding tube in his stomach – granted not for the cf but it meant that he could gain weight which is massively important in cf patients for them to be able to fight infection. 🍼

4 general anaesthetics – 3 operations 1 MRI scan. 😴

Over 7000 medications just to keep him well 💊.

A mask held to his face between 1-4 times daily to keep his lungs clear of thick mucus that could cause serious life threatening infections. Totalling over 16,000 minutes.

1 serious bacteria in his lungs which has took 13 months of treatment so far and will require another 8 atleast.

IV treatments lasting two weeks at a time.

1 hospital visit whilst on holiday. 🌊☀️

having to keep him away from every person with even the first signs of a cold.. because even a cold to Stanley could mean pneumonia, flu or a serious infection. 🤧

there is no breaks from cf, all of this is what we have to do day In day out – birthdays 🎉Christmas🎄 holidays 🌞 all being no exception.

and that’s ok because you do what you have to.. but the most frustrating part is knowing that there are a group of people sat around a table never having lived a day in our life’s deciding that my child’s life and over 3000 others living with cystic fibrosis lives are not worth the money a drug called ORKAMBI costs. 💷

Every year the nhs spends millions on smoking related issues they are people that have had a choice. My child hasn’t had a choice!

And is yet he and others are being denied a drug that has been proven to reduce hospital admissions, infections and improve lung function… all because of cost!

this drug isn’t a cure for cf but it’s the closest thing we have to it at the minute and if we can get ORKAMBI it means we won’t have to fight so hard for other new ground breaking drugs in the pipeline.

the cf community are literally the definition of small and mighty it’s a group that no one wants to be in – yet everyone is proud to be part of.

but we are in it, our children are in it and we won’t stop until they have access to the drugs they are ENTITLED to!

No one is going to tell me that my child isn’t worth the money this drug costs!

SO PLEASE SIGN LETS GET TO 100,000! 💛

https://petition.parliament.uk/petitions/209455

Through Daddy’s Eyes: When you’re ready Son

Most of the blogs that I do are planned in a way – I jot down emotions and thoughts as I go along and then bring them all together and share these with you. This particular blog is pretty much unplanned and that’s because Sophie showed me a blog recently which got me thinking. The blog Sophie showed me made me think that Stan will see this one day, he will see the blogs we have written from our emotions laid out to trying to raise awareness of Cystic Fibrosis. I also thought the reason this blog is here, the reason we have started fund raising is because of Stanley and to show you, our followers, a life with Cystic Fibrosis. We have never spoken to Stan directly through one of our blogs, to tell him how we feel or why we have done certain things. I think the time is right for me to do that, to speak to Stan at a time we are just about to embark on a new year and a time where we reflect. Continue reading “Through Daddy’s Eyes: When you’re ready Son”

Thinking it over. 

well now we’re back to some sort of normality after the school holidays and hospital admissions it’s time to focus more on fundraising and the blog again.
We have been abit quiet on the blog front for a while now, I don’t think it was intentional but sometimes there’s just not a spare minute in the day!

Continue reading “Thinking it over. “

Through Daddy’s Eyes: The First Year

It’s Stanley’s first birthday coming up and I thought it would be a nice time to look back on the year we’ve had and coupled with the fact I think my last blog was a bit brief – I think you’d agree we’ve had a hectic year, hospital admissions, bike rides and proposals and that not even half of it! Normally Sophie proof reads my blogs but this time I’d like her to read this in the same vein you, the people who follow the blog, do.

Continue reading “Through Daddy’s Eyes: The First Year”

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