|Posted by Lorraine Barnes on June 6, 2017 at 9:45 AM|
Can't believe it's been nearly a year since my last Blog ..... and we are STILL WAITING to get our hands on Orkambi! Every step towards getting it approved seems excrusiatingly slow for families like mine desperate to grab a hold of something which might make a massive difference to the lives of our children ..... time is ticking away and Cystic Fibrosis being degenerative by nature means it's not waiting for anyone.
Since my last Blog a year ago both of my sons healths have...Read Full Post »
|Posted by Lorraine Barnes on June 17, 2016 at 3:35 AM|
Today NICE (National Institute for Health and Care Excellence) rejected the use of ORKAMBI in England for Cystic Fibrosis patients with the common F508dl mutation - the mutation which both my sons have.
This announcement does not come as a surprise to me, my family, or the Cystic Fibrosis Community as a whole - it would have been more of a surprise had they passed it for use!! Everything comes down to MONEY - COST EFFECTIVENESS.&...Read Full Post »
|Posted by Lorraine Barnes on May 26, 2016 at 4:20 AM|
The final 2 Fundraisers!!
On Sunday 15th May I did a bit of Wing Walking!! The idea of doing something as exciting as Wing Walking seemed a good idea when I booked it, but when the time came to actually DO it, that was a whole new story!! Imagine standing on top of an aeroplane as it takes off in to the sky - looking down on little houses and having the...Read Full Post »
|Posted by Lorraine Barnes on March 1, 2016 at 10:05 AM|
Long time no Blog!! I'm not very good at Blogging - I tend to waffle a lot and then none of it makes sense .... so here goes another waffle!!
Since my last Blog in May (can't believe it's that long since I did one!!), I've done several more Fundraisers - some small, some not so small! I try to itemise the Fundraisers on my Challenge list when I can. Fast approaching £33,000 of my target now and there is no way I could ever had got this far without the support of m...Read Full Post »
|Posted by Lorraine Barnes on May 27, 2015 at 2:40 PM|
What an amazing day!! Overwhelmed with the support of family, friends and neighbours on Saturday at my Village Fundraiser/BBQ/Head Shave Event - it went far better than I anticipated. Good friends pulled together to do their bit beyond what I expected - so touching. We ran out of Tombola items so added more from donations which arrived on the day, we ran out of Wine to Water so we did it all again with 10 more bottles of wine donated on the day and had to send out for more f...Read Full Post »
|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 u...Read Full Post »
|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...Read Full Post »
|Posted by Lorraine Barnes on March 27, 2015 at 8:00 PM|
It's just under 14 months now until my 50th birthday - time is speeding by far too quickly for my liking!! Lot's to do between now and then fundraising wise in order to try and achieve my target of £50,000 raised, but lot's planned over the next few months to help me on way way towards getting there. Within the next few months I'll start writing to businesses seeking Sponsorship/Donations for the Ball and am busy compiling a "Wish List" for things I'd like on t...Read Full Post »
|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 t...Read Full Post »
|Posted by Lorraine Barnes on December 30, 2014 at 6:00 PM|
Within 5 days I have lost 2 really close friends in the CF Community - the lovely Helen lost her fight to CF rapidly on 23rd December - so fast - so unexpected and such a sad sad loss to me - she had been my friend for well over 10 years - back to when Dan used to be a Postpal so he must have been about 8 or 9 years old then. She was someone who was always thinking about other people despite being poorly herself - even up until Joe's last Hospital admission in November she was messaging...Read Full Post »