|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 me giving me tips on how he could pass the Nasal Gastric Tube and asking if there was anything she could send him - there wasn't, her good wishes and support were always all I needed and now she's gone - just 26 years old and married for just over a year - so cruel.
5 days later the lovely Emily lost her fight for life after receiving a 2nd lung transplant mid-December - she had become poorly after developing Pneumona - Emily was a beautiful person - loved by hundreds - me included. She was a founding member of the LLTGL Charity (Life Life Then Give Life) for Organ Donation. I'd known Emily for over 10 years way back to the day of the old CF Trust Forum and before she was listed for her 1st transplant. I did the Emily's Angels run/walk around Hyde Park with her when she was on oxygen and then the year later when she'd had her transplant and the year after that, then Emily was Guest Speaker at my first Ball in aid of the CF Trust - she inspired many that night and continued to do so for many years after with her Campaigning for Organ Donation. She was 30 years old, married the year of her first transplant and mother to 19 month old Sophia born via suragacy.
It's hard, as the mother of 2 boys who have Cystic Fibrosis, to not let these losses affect me - I cry quietly in the night - worried for their future. The thought of loosing one or both of my sons is something I can't bear to think about .... ever, but there may come a time when Cystic Fibrosis does it's best to take them from me. In the meantime, I continue to work hard to raise awareness for Cystic Fibrosis and to complete the Challenge I set myself in October 2014 ... to do 50 Fundraisers in 19 months until my 50th birthday and hope to raise £50,000 by the end of my birthday Charity Ball.
I have several Events/Challenges lined up for 2015 so far from a Zip Slide in Snowdonia with Dan, Abseil in London with several CF parent friends, Wing Walking with Dan IF I can get the Sponsorship of £2000 for us both to do it, Head Shave combined with a Fundraising Evening in my Village Hall and a "Team 50" Tandem Skydive Team which is already booked for 27th June 2015 at Langar Airfield in Nottingham - I just need to find 49 more people to do that with me!! There will be more smaller things going on in the year like Facebook Auctions, ebaying items, seeking support from local businesses for Sponsorship/donations and then from June/July this year I'll start working on seeking Auction items for my Ball. All hard work - all very time consuming - but I set the Challenge and I aim to complete it to the best of my ability - I am only one person, but one person can drum up so much support .... if you only ask the right people! I haven't raise the amount of money for the CF Trust that I have without building up some contacts and working out what does and what does not work.
There are days when I feel I can't do this - it's all too much - I doubt myself and I fear failure and rejection - combined with the boys care and wanting to do all I can to raise awareness for Cystic Fibrosis and complete my Challenge - but when I think about the friends I've lost to Cystic Fibrosis and their families left grieving .... I know I CAN and I WILL do it - I need to learn to take a break when I'm tired and then come back to my tasks. So far I've raised just over £3000 once the Unwanted Christmas Presents/Sales Items Auction is over .... I couldn't have done that without the support of my family and friends .... one must NEVER underestimate the power of the CF Community when they pull together.
All I ask if you are reading this is to please consider supporting me in any way you can whether it be taking part in an Event with me, Sponsoring me, making a donation, organising an Event for me, or offering an ear for me to moan in from time to time when I'm tired and think I can't do it .... all as equaly welcome and all invaluable.