Cystic Fibrosis Fundraisers

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ArcelorMittal Orbit Abseil and Cystic Fibrosis

Posted by Lorraine Barnes on April 8, 2015 at 11:55 AM

I'm doing the Arcelor Mittal Orbit Abseil at the Olympic Park Stadium in London on Sunday with my eldest son (Daniel aged 19 who was diagnosed with Cystic Fibrosis aged 4 years old) - am starting to feel a bit nervous!  I made the mistake of watching some You Tube footage of the Abseil last week so I could see what I was letting myself in for and OH MY GOD - it's bloody high!!  Felt a bit sorry for the young lad who was doing it who was told to start moving once his body reached the level of his legs supporting him on the wall and he didn't listen so he started going down head first!!  That'll be me - my brain won't connect with my legs and I'll be going down head first! 

I don't tend to think too much about anything I sign up to do fundraising wise until the last moment - I look for suitable Challenges/Events I "think" I could do, and then put more thought in to it nearer the time!!  There are certain Events I know I couldn't do, i.e. run a Marathon, run any sort of race - I have dodgy knee's and dodgy hips and am rather unfit, that's not to say I wouldn't ever try these things, but I think I've got enough going on at the moment and finding the time to train would be nye on impossible.

For my 50 Fundraisers Challenges I wanted to try and do things I've never done before which is why I was attracted to the ArcelorMittal Abseil - I've never done an Abseil - this looked good and "different" - so I signed up.  And then I thought this was a good Challenge to do with the CEO of the CF Trust, Ed Owen, after I Challenged him way back in December one evening after a glass of wine or 2 to do something with me in 2015!!  One must remember to keep off Twitter when one has had the wine open - you never know what you'll end up committing to!  Really pleased he has taken me up on doing A Challenge with me though and is taking part on Sunday, even though he has announced that his middle name is Vertigo!  Mines Ann - I don't suffer from Vertigo!

At the moment Cystic Fibrosis, my reason for doing my 50 Fundraisers Challenges, is threatening to stop me doing the Abseil.  My youngest son is not doing great at the moment - currently on IV antibiotics (Tobramycin and Ceftazadime) twice a day with a lung function of 62% - big drop of 20 - 25% within the last 4 months.  His blows have not been great since he had a Gastrostomy on 14th January after which he got an acute chest infection and I don't think he's managed to shift the mucus lying on his chest after his operation.  His CF Team are not happy with his decline in lung function and wanted to take him in to Hospital today to start him on Colomycin IV antibiotics 3 times a day and as he's never had that before they wanted to observe him for a few days to make sure he didn't have an allergic reaction to it like he did with Tazocin where we had to rush him to A&E one evening.   As he is to be admitted next week anyway to get his PEG removed and a Button inserted via General Anesthetic I asked them to consider admitting him on Monday and they agreed.  Putting extra effort in to his Physio treatments and his Hypertonic Saline (which he hates) so that he'll be well enough to join us in London over the weekend.  He's looking forward to visiting the Science Museum on Saturday.   I do think the fresh air will do him good too - spends a lot of time on his "gadgets"!

Cystic Fibrosis is a really complicated condition to explain to people who know nothing about it - my boys "look" well, but from the inside, all is not well.  The reality of Cystic Fibrosis is actually really HARSH, but in some ways I'm pleased that it is a "hidden condition" because my boys can get on with their lives as best they can without anyone taking pity on them or pointng fingers.  Neither of my sons draws attention to having Cystic Fibrosis in any way - they are both very private about it - one told their Class Mates they'd been on holiday when they'd actually been in Hospital for 8 days and the other took 4 months to tell his University Flat Mates that he had CF!

Below is a picture I took of Joseph last week while attached to his evening IV Infuser and his Overnight Feed Pump - I asked him if he would do me a "hidden side of Cystic Fibrosis" picture and he agreed - I tried to get him to look like they do in TV adverts:  "Give just £2 a month for children like Joseph .... !!"  Joe doesn't "do" sad though or "needy" - he did struggle and I've upoaded the "after" video to show just how cheeky he is!!  He takes Cystic Fibrosis in his stride, but would put many moaning adults to shame with all he goes through and he is just 11 years old.   Reality picture and video:

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If you would like to Sponsor me and Dan to do the ArcelorMittal Abseil you can do so HERE or by TEXTING CFSP50 £5 to 70070 - we would appreciate your support. 

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