Cystic Fibrosis Fundraisers

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ArcelorMittal Orbit Abseil - UPDATE & Joe's Health

Posted by Lorraine Barnes on May 3, 2015 at 9:55 AM

Since my last Blog there have been 2 failed attempts to do the Arcelor Mittal Orbit Abseil in London!  We, as a family, tootled off down to London for the weekend to do the Abseil on 12th April - only to actually be stood under the structure when we found out the Abseil had been cancelled due to high winds!  Cue major disappointment!!  We did get to go to the top for free to have a look around though - and made the mistake of looking down!  Standing at the bottom looking up it didn't look too bad - standing at the top looking down - scary stuff!!  Didn't put me off doing it again though - a challenge is a challenge!

The Abseil was re-scheduled for today - 3rd May - but it was cancelled again on Thursday due to high winds being forecast.  Not a good idea danging from a rope 252 feet up in the wind - I for one don't want to end up in the land of Oz or have a rope tangle itself around my neck!  Next re-scheduled date is 7th June, but as Ed Owen, CEO of the CF Trust, can't do it on that day and I Challenged him to do an Event with me, we are waiting for a new date to do it together with his Secretary, Rose, as a Team with me and my eldest son - it would be a real shame to miss out on doing the Challenge with him when I set it - would also be good publicity for my 50 Fundraisers Challenges as I need all the help I can get in order to get to that £50,000.

Heading towards 25% of my target now - I'd LOVE to get to that target before my 49th birthday in 17 days - 17 days to raise about £950!  It CAN be done with the support of my family and friends - I have about 1000 Logo Bugs out and about being sold me for - I'm doing a Eurovision Song Contest Sweepstake and I've got some items to ebay to raise some more money. 

My next big Event is my Head Shave/BBQ/Fun Day on 23rd May where I hope to raise about £1000 towards my target.  As we only live in a small village that might be a challenge to make, but it's only an estimate.  There will be a lot going on on the day from 3 pm onwards from Tombola, Wine to Water, Car Boot, Raffle, Cake Stall, Auction, BBQ, Bouncy Castle, games for the children, Cake/Tea/Coffee and my Head Shave at about 8 pm - followed by music/dance.  Highest bidder on the day gets to shave the first strip of my hair off!!

I've got some new CF Wristbands on order purely for my own fundraising ventures - going to get some Fridge magnets done and they are on order.  I've got a Summer Facebook Auction starting to co-incide with CF Fundraising Week from 6th June, having a Stall at an Event in Grantham on 6th June and am hoping to secure a local Bag Packing/Collection spot in a supermarket for CF Fundraising Week too.

All the above tends to be fitting in and around CYSTIC FIBROSIS at the moment which is currently stretching me to my limit with youngest sons health causing me great concern.  He was admitted to Hospital on 12th April for 5 days initially to change him to a different IV antibiotic he'd never been on before in the hope that it would improve his lung function to monitor him incase he had an allergic reaction to it - which he did, but not a severe one.  He had a strange feeling in his throat and then started to breath really heaving and started shaking - hyperventilating - so he was put on oxygen overnight and given Piriton after each dose incase he had a reaction again, which he didn't.  Sadly after 3 weeks of IV antibiotics there was no improvement in his lung function which sits at 65% at the moment - up slightly from 59% at the beginning of IV's.  He's lost about 30% of his lung function in the past 6 months.  Trying to pin point the reason is proving tricky.   While he was in Hospital he had his PEG removed via General Anesthetic and a Button inserted to make overnight feed access easier and it is a lot less intrusive.  The good news is he's put on over 5kg in 3 and half months so that is going in the right direction - one bit of good news!  He's had a CGM (Continuous Glucous Monitor) fitted aswell just recently to make sure his Diabetes Bloods are not being affected by his Overnight Feed - they are "normal", so that's something to be thankful for too.

There are days when I feel so tired and really annoyed with CYSTIC FIBROSIS - overload kicks in and I don't think I can get to my £50,000 target - but there are days when I just battle on regardless - taking a day or two off works wonders - and a large glass of wine on a Friday night where no feed pump is on!  The support I've had from family, friends and neighbours so far is what's spurring me on - the people who want me to get to that target and have contributed to it in any way, no matter how small, make a difference - a MASSIVE DIFFERENCE!!  

Onwards ... things to do, proceeds to find, awareness to achieve - CF Fundraising Week from 6th - 14th June - I'll be busy - WHAT ARE YOU DOING TO RAISE AWARENESS OF CYSTIC FIBROSIS? 

Pictures of Joe attached while he was in Hospital last month - awareness - the hidden side of Cystic Fibrosis.

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