we have used over 10,000 syringes in 18 Months to provide water, medicines and enzymes ๐Ÿ’‰

over 1100 nebulised treatments totalling around just over 13 days of stanleys life. ๐Ÿ’Š

in just 18 months we have had around 10 admissions to hospitals. ๐Ÿฅ

15 cf clinic appointments. ๐Ÿ‘ถ๐Ÿผ

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. ๐Ÿ˜ท

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. ๐Ÿ’‰

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. ๐Ÿผ

4 general anaesthetics – 3 operations 1 MRI scan. ๐Ÿ˜ด

Over 7000 medications just to keep him well ๐Ÿ’Š.

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. ๐ŸŒŠโ˜€๏ธ

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. ๐Ÿคง

there is no breaks from cf, all of this is what we have to do day In day out – birthdays ๐ŸŽ‰Christmas๐ŸŽ„ holidays ๐ŸŒž all being no exception.

and thatโ€™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 lifeโ€™s deciding that my childโ€™s life and over 3000 others living with cystic fibrosis lives are not worth the money a drug called ORKAMBI costs. ๐Ÿ’ท

Every year the nhs spends millions on smoking related issues they are people that have had a choice. My child hasnโ€™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 isnโ€™t a cure for cf but itโ€™s the closest thing we have to it at the minute and if we can get ORKAMBI it means we wonโ€™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 itโ€™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 wonโ€™t stop until they have access to the drugs they are ENTITLED to!

No one is going to tell me that my child isnโ€™t worth the money this drug costs!



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