Cystic Fibrosis Fundraisers

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Cystic Fibrosis Reality

Posted by Lorraine Barnes on January 29, 2015 at 7:10 PM

I've spent the last 31 days administering IV (Intravenous) antibiotics to both boys (albeit an 8 day break while Joe was in Hospital overseeing beeping machines!) - 2 weeks of IV's for Dan and overlapping Joe's with 3 weeks worth, as well as being in Hospital for 8 days with Joe while he had a Gastrostomy.  Poor Joe had a tough time after the Gastrostomy coping with the pain as well as getting an acute chest infection after the operation which resulted in him being in longer than usual to try and get his chest clearer.  After a good few days of intense physiotherapy and hypertonic saline he managed to shift quite a lot of mucus which had build up in the base of one lung and behind his heart.

Watching all Joe went through while he was in Hospital has made me even more determined to reach my target of £50,000 before I am 50 next year - difficult to describe to someone who knows nothing about CF all that they have to endure to try and stay well.  At the moment Joe weighs 24kg which is less than he weighed in May 2013 so the battle is on to try and get some weight on him.  His lung function has dropped to 69% - a drop of about 20% in the past few months.  His daily regime of inhalers, physio, nebulisers, insulin, tablets, and now overnight feed, is quite overwhelming.

With regards my fundraising plans - they are all on track with various Events being organised from the Abseil in London in April, Fundraising Event in my Village Hall in May combined with my head shave - Team 50 Tandem Skydive in June and family walk up Ben Nevis in the summer (to be confirmed) - as well as currently having a Logo Bug designed by Sally at Mr Blippy.  I need to try and get local business Sponsorship for Dan and I to take part in the Wing Walking Challenge and also organise the Zipwire Challenge in Snowdonia which might be later on this year - I can't do everything all together as it would just become too overwhelming - one Challenge/Event a month and once one is organised and completed I can move on to another.

I am finding it really frustrating trying to rope people in to join me in the Team Events - it's hard work trying to motivate people, but you do have to pick the right moments to strike with your plans!

The CF SUPERHEROES Calendar will go down in history as THE last Calendar I compile for the CF Trust - I've said it many times before, but this one has to have been the least supported - amazes me the amount of people who contribute a picture and never actually buy a Calendar!  If everyone supported it 100% it would sell out - at the moment I'm left with 600+ which if they'd all sold at the original price of £6 each I'd have made £6000 towards my target - I've had to reduce them in price, offered a buy one get one free offer and still they sell on average of 2 - 3 at a time!  I need to plough my energies in to fundraisers which help me reach my target so the rest of the Calendars are going to be used at fundraising events this year to raise awareness of Cystic Fibrosis.

Sadly not everyone has my passion for fundraising, I have to learn that and appreciate that everyone does their "bit" when they can and it all does make a difference - I'm an "in your face" sort of person with my Rottweiller attitude to raising awareness of Cystic Fibrosis - I've lost too many good friends to the dreadful condition and I won't apologise for my enthusiasm - I want more than anything for my sons to have a secure future and the only way that can ever be achieved is by fundraising to fund Research so that one day we can see the last of Cystic Fibrosis and it's degenerative nature.


Pictures of Joe and his Gastrostomy and his overnight pump feed - the hidden side of Cystic Fibrosis.





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