Cystic Fibrosis Fundraisers

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One Year on and we are STILL WAITING for Orkambi!!!

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 deteriorated considerably and it's very scary to think of a future for eiher of them.  Joseph had Surgery for a Fundoplication procedure in October 2016 (pictures from this admission below) and since then his life has just become one round of treatments and even more horrible complications - he can no longer be sick, but he can retch when he feels sick, and he does it a lot.  He suffers from terrible wind problems now and eats very little - the Overnight Feed was too much for him to begin with, but that is slowly getting better.  He has feelings of fullness when he's eaten barely a mouth full of food and meal times are a real battle to encourage him to eat just the tiniest amounts of food - most days he eats nothing at all and the Overnight Feed is what is keeping him going.  His weight gain since Surgery has been none existant - we take one tiny step forward and then 10 steps backwards as soon as he picks up a bug like a cold, which he did a couple of months ago.  His lung  function now averages 43 - 49%.  Imagine living a life aged just 14 years old with half lung capacity.  He gets breathless often just by walking up stairs on really bad days - he has poor quality of life for a child his age who should be out enjoying himself on his bike, walking, running and eating properly.  He has one round of treatments after another before and after School which can last up to 2 hours.  He has a ventilator now which blows air in to his lungs to open up the airways to make mucus clearance easier.  He nebulised 3 drugs twice a day - DNase to thin the mucus, Hypertonic Saline to help shift the mucus, and nebulised antibiotics.  He has Insulin due to having CF related Diabetes.  Ursodeoxycholic acid for  -liver disease.  Vitamins for bone density - Vitamin D3, Vitamin D, Vitamin E.  Creon with all food and Overnight Feed.  Probiotics.  Domperidone for sickness.  Various forms of Physio from Percussion, Acapella, PEP.  He has Nasal Polyps so needs spray up each nostril once a day.  He has IV antibiotics every 3 months for 2  - 3 weeks at a time.  His growth is poor and he is noticeably small for his age.  And yet he never complains - but I know he hates CF and all it entails - he just wants to live a normal, happy, pain free life.

Daniel, aged 22, has been undergoing treatment for Mycobacterium infection since September 2016 which began with 3 weeks of intensive IV antibiotics followed by 18 months of 3 different oral antibitics a day along with various Vitamins and has just this week finished another 3 week course of IV antibiotics after picking up a cold a few months ago which settled on his chest - he lost 10% of his lung function which dropped to 66%, which is unusual for him as his lung function has always been mid 70's since transferring to Adult Care when he ws 16.  This worrying slide in health is concerning.

Both my sons are handsome, intelligent and popular young men - as their mother I want them to live a long, happy and healthy life.  I fear for their futures so much now - the older they get the more care they need, the more medication they need, the bigger the worry. 

Cystic Fibrosis causes so much stress not only to the sufferer, but to their family and friends who look after them and every infection my sons pick up these days leads to less and less lung function.

Orkambi to us would mean less worry, less stress, a better securer future - better health would mean so much.  I know Orkambi doesn't work for everyone, but quite frankly when your children are as ill as mine now are, I'm happy to grab hold of even the tiniest glimmer of improvement - we just get deterioration these days - blows down every visit, weight less.

I'd like to personally challenge any of the decision makers for approval for funding for Orkambi to come live with me and my family for 1 while week.  Experience what it's like to juggle all the medication my sons need daily - and their Prescription lists are vast now.  Try drawing up IV antibiotics for 3 weeks and administering them 3 times a day knowing how sick they are going to feel, but that their lungs are priority.  Try listening out for the Overnight Feed pump alarming all night long even on nights it's not alarming because your brain is tuned in to listening out.  Try changing soaked sheets when the Overnight Feed line disconnects.  Try watching your 14 year old retching because he can't be sick, but he can feel sick - watching mucus and spit coming out of his nose, which sometimes ruptures a vessel in his nose which makes his nose bleed.  Try cleaning up blood after a serious coughing fit after a lung bleed.  Think how you'd feel watching your sons suffer every single day knowing you can't do anything to stop the decline no matter how many drugs you pump in to them, how many hours of treatments you do with them - because Cystic Fibrosis by nature is degenerative.  Cystic Fibrosis makes you feel useless.

I'm joining the Cystic Fibrosis Trust in London on 26th June to Protest for Orkambi for my sons, for all those living with Cystic Fibrosis and for all the friends I've lost to this dreadful condition - Cystic Fibrosis is NOT just about Physio - it's time more was known about it and all it entails because it is still robbing us of our young friends and I've lost countless to it over the past few years.  Time to do battle and to fight for the right to have access to these drugs - my sons lives are priceless to me and I'd gladly give my life for them both if it mean't them having a long, happy life - to see 50 and beyond.

I'll finish this Blog with a few harsh reality images from my youngest sons Surgery in October from which he is still slowly recovering from - more body image problems for him to live with.  Do support the Orkambi Protest if you can on 26th June either by attending one of the marches in London, Cardiff, Edinburgh or Belfast, or you can support on-line during the day.  For more information long on HERE




Yes to ORKAMBI

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.  It's sad to think that the chance of helping to prolong my sons lives comes down to MONEY!! 

This morning I read a quote in the Daily Mirror from Prof Carole Longson, director of the NICE Centre for Health Technology Evaluation saying the cost was “too high” to represent “good value for money”.   Well I'd like NICE to add up the cost of the following medication, equipment, treatments, NHS Staff wages/time management which typically represents what it takes to keep my sons alive - one already has a rapidly declining lung function at just 13 years of age - currently averaging 49 - 51%.

Medication & Equipment for 2 boys with Cystic Fibrosis:

Nebulised PROMIXIN twice a day, indefinitely

Nebulised DNASE (Pulmozyme) twice a day, indefinitely

Oral Antibiotics - Azithromycin - 3 times a week

Vitamins:  Vitamin E, Vitamin AD, Vitamin K - every day

Reflux Medication:  Omeprazole/Lansaprasole - every day

Creon 25000 - average of 50 - 60 tablets a day for 2 boys

Levimir Insulin - 8 Units every day

Peptomen Junior Overnight Feed - 1000 ml - every night

Steroid Nasal Spray

Scandishakes - 2 each every day

Inhalers:  Ventolin / Seritide

Insulin Pen

iNeb's x 2

Bloods Monitor

Needles for Insulin Pen

Physio Equipment:  Acapella x 2 - PEP Device x 2

Spacers for Inhalers

Back up Nebuliser for Hypertonic Saline when needed

Hypertonic Saline

Overnight Feed Pump

Overnight Feed Stands

Giving Set's for Overnight Feed pump and double Connectors


IV Antibiotics / Hospital Admissions / Hospital Appointments

IV Antibiotics for 13 year old son every 2/3 months for 2/3 weeks every time

Home Delivery Service for IV Infusers and Ancilleries needed:  Needles, Syringes, Alcohol Wipes, Sharps Bin, Saline, Heploc

IV Antibiotics for 21 year old son as an when needed - averaging twice a year at moment

Hospital Admissions when unwell for IV Antibiotics/treatments


Hospital Appointments:

Diabetes Clinic every 3 months

CF Clinic appointments every 6 weeks - Port Flushes

Operations:  Portacath Operations, Broncoscopies, Endoscopies, Gastrostomy

Dieticians Appointments

Hearing Test

Diabetes Eye Screening

Gastroentrologist Appointments

Annual Reviews


All of the above just an EXAMPLE of the treatment/medication needed to keep a child with Cystic Fibrosis well - and all of that STILL doesn't stop the decline - no matter how hard you try.  Infections still happen, they can still catch a cold which can attack the lungs, the sticky mucus still causes damage - long term irriversible damage - the no going back and mending it type of damage.

I have 2 packed medication cupboards full of tablets/scandishakes/syringes/saline/sterile water/hypertonic saline/spare Mic-Key Buttons, Feed lines, thermometer, SAT's monitor, daily medication and a loft packed with Overnight Feed Boxes/giving sets/double connectors.

ONE TABLET could make all the difference to the lives of children like mine - taking away the fear of a slow drawn out painful death - a loss of lung function over time. The need then for TRANSPLANT - another extremely HIGH COST to the NHS.

The cost to the NHS ALREADY is immeasurable - someone SERIOUSLY needs to sit down and add up the cost of all of the above - I can promise it will come to more than £100,000!!!  If ORKAMBI can help reduce infection/stabalise the lung function, it would mean less of a burden on the NHS - less need for ORAL ANTIBIOTICS - LESS IV ANTIBIOTICS - LESS WORRY for families like mine.

How can someone who knows absolutely NOTHING about Cystic Fibrosis, or what it entails, how it affects families like mine, lives of people living with Cystic Fibrosis, make decisions based purely on the COST of a Drug?!  I've seen great examples of how it's already improved lives of people who before couldn't walk far without getting out of breath, who had countless numbers of Hospital admissions.  I want that for my sons. 

I challenge someone from NICE to experience a typical DAY, WEEK, MONTH in the life of a person with CYSTIC FIBROSIS - try doing some of the treatments they have to do every single day - try swallowing up to 10 tablets with every meal you eat - try cramming in inhalers, Physio, Nebuliser, tablets, Insulin, bloods checking ... before you dash off to Work!  Try having a feeding tube shoved up your nose and being fed through it - it hurts - it's intrusive.

My 13 year old son can't run - he can't ride his bike - he can't keep up with his peers at School - he gets out of breath just walking up the stairs. His life is just one round of medication/treatments/Hospital visits - he eats nothing - he is fed Overnight through a Mic-Key Button in his stomache - he has no great quality of life for a child his age.    He deserves a secure future - he is bright, intelligent and deserves a life.

SAY YES TO ORKAMBI - WE'VE PAID ENOUGH CONTRIBUTIONS TO THE NHS TO HAVE THIS DRUG APPROVED - DON'T BE MEAN - SEE THE WHOLE PICTURE - NOT JUST THE COST.

Images of my youngest son and just a small example of all he's had to endure so far in his life - more than most adults like me will ever have to endure.  Images of medical equipment/overnight feed/packed medication cupboard.  Give him a chance for a better future - PLEASE.  #YestoOrkambi



Wing Walking & The Ball!

Posted by Lorraine Barnes on May 26, 2016 at 4:20 AM

The final 2 Fundraisers!!

Wing Walking

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 wind blow in your face so fast that you can't see anything because of the tears streaming down your face - the cold air was making them water - not fear - although I clutched hold of the support bars behind me for dear life from take off to landing!!  I was told I could wave my arms around if I wanted - pretend to fly, they said!!  Put your thumbs up if you are okay so the pilot can see you, or thumbs down if you want to land .... oh no, I wasn't letting go of those bars for anyone!!  The strangest feeling in the world being stood on top of that plane - nothing at all in front of you to hold on to - just sky!!  Inwardly I felt if I let go to put the thumbs down I'd fall off!!  So I kept a tight hold whilst inwardly counting down the seconds to landing!!  We hit a bit of turbulance on a couple of occasions with the height of the plane which scared me to death - it's a good job the engine was so loud or I'd have been heard stiffling a scream or two!!  Take in the view over London over "that way" I was told - London was a blur through the streaming eyes, and it didn't help that the cold wind was making my nose run and I daren't take my hands off the bar to wipe it!!  So I landed with streaming eyes, snotty nose and a windswept Bridget Jones hair all over the place kinda look!!   The relief to landing can be clearly seen on the video - where I dared to give a THUMBS UP!!  It was a scary experience for me, but I'm pleased I did it - I like to carry through if I sign up to do something and it was definitely a great Finale for the fundraising before the Ball.  I felt relief and satisfaction at having done it and gained a Certificate to prove it!!  I like to try things which push me outside of my comfort zone.



The Ball

What an amazing day!!!  I want to go back and do it all again.  19 months of dreaming about the day and it came and went too fast.  It was a "all hands on deck" type of day leading up to the evening and the support I had on the day, as well as leading up to it, was outstanding and truly overwhelming.   We were all finished with the decoration and laying out of prizes by 2 pm so it was time to get ready and prepare to meet my Guests.  I didn't get chance to speak for long to anyone - brief hello's were about all I managed with some people and some I didn't even get that far!!  Far too busy trying to make sure everything went as planned.  I think the Auction went astray for a while and was told to not worry - just enjoy myself - so I did!!

Delighted to have Actor Tristan Gemmill, currently appearing as Robert Preston, Tracy Barlow's ex-husband, on Coronation Street, attend as my Special Guest for the evening - only a select few people knew he was going to be there, me foremost!  This had been kept quiet mainly because I didn't want to get my hopes up if I made it public that he would be there "just incase" - I know he's a busy man with a family of his own and his filming schedule is quite strict.  He left Manchester at gone 5 pm after finishing filming later than anticipated and arrived in Grantham just after 8 pm.  He stayed until gone 11 pm and then travelled home where he'd get back to his family at nearly 2 am.  He was such a gentleman on the evening - he gained a whole new heap of fan's - mostly CF mum's in attendance!  He posed for photographs with whoever wanted one and posed with Green Screen Studio's for images to sell where he signed the inside of the covers - I think I bought most of those though to add to my collection of signed items.  I've been a fan of Tristan's since he was in London's Burning in 2002 and have run a Fansite for "All Things Tristan Gemmill" for over 5 years, with his approval - the Fansite is credited to his Twitter profile.  Tristan supports fundraisers/ventures for me when he can.  The Fansite provides me with a welcome break from the reality of Cystic Fibrosis when times are tough - and times have been really tough for Joe over the past 2 years.

Monies raised on the evening of the Ball made nearly £6000 in total, although an exact figure can't be given as people were giving monies for tickets owed, and I received £500 as Sponsorship for the Tandem Bike Ride from Rachael Brader and £550 from a Swimathon fellow CF mum Cheryl Kitchen arranged, which was not included in the £6000 - as well as 50p's collected for 19 months and donations added to those for the Ariel photograph of them which ended up totalling £370.

The following day a £5000 Anonymous donation was received on my Justgiving page taking me over the £50,000 target - which was a massive relief (I do know who the Donor is, but they wish to remain Anonymous).  The delight in reaching that target after 19 months of Fundraising was clear to all who know me well.  There were a few doubters at the beginning of this journey -" it's a lot of money to raise", I was told on a few occasions - yes, I know it's a lot of money - which is why it makes it a good Challenge!!  I love a Challenge - if I think it's possible to do something, I'll give it a go.  Life is too short to regret doing something you wish you'd done given the chance .... so I took a chance.  Nothing I do is ever going to stop me living a life - I have lungs which work,  I can breathe in and out without coughing, my chest doesn't hurt when I cough, I can eat without taking tablets, I don't need plugging in to an Overnight Feed, I don't have umpteen Hospital appointments to attend.   I've lost countless numbers of friends to Cystic Fibrosis over the years - I've seen unbelieveable heartache through friends who have lost children to Cystic Fibrosis - it is an Evil Unrelenting Condition - and while I can still breathe I'll continue to Fundraise and raise awareness of Cystic Fibrosis because my fear is that one day, I will loose one, or both of my sons to Cystic Fibrosis, and that is something I can't bear to think about - my energies are ploughed in to Fundraising because that's what keeps me focused - keeps me busy and stops me thinking about the "what if's".  I consider it my job - a job I enjoy - I enjoy bringing people together - I enjoy the support - the community spirit and the results all these bring to achieving goals.  Never ever underestimate the power of a Community pulling together to help each other - a Community with the same aim - to see an end to Cystic Fibrosis .... one day we will.

Now that I've reached my £50,000 target and beyond - what next?!  Anyone who knows me well will know that won't be the end of my Fundraising - it was just another Challenge to add to my list - I've got idea's for my next Challenges ... but time for a short break to spend with my boys who are celebrating milestone birthdays themselves - Joe is 13 today and Dan will be 21 next month - and then I'm due a bit of decorating time while thinking about how to organise my next Event!!

Who knows .... I might beable to persuade Tristan to do a Challenge with me - if his filming Schedule allows!   He asked me at the Ball if there was anything I didn't do which I'd liked to have done ..... Ben Nevis - how about that Tristan?!

I've decided to keep my Justgiving Page open for a year so I can add to it during my 50th Year with other smaller fundraisers planned up until Christmas - new target £55,000 by Christmas Day!  Who know's - I might make £60,000 by my 51st Birthday!


Link to the SPEECHES on the night of the Ball by Ed Owen, CEO of the Cystic Fibrosis Trust, and myself, can be found HERE

https://www.facebook.com/cysticfibrosisfundraiser/videos/10154240976332437/




A Summarised Update!!

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 my family and friends.

I'm well underway with getting my 50th Birthday Ball organised - tickets are selling fast - lot's of amazing donations arriving for the Auction and Raffle - my loft is really busy with some great donations.  It's all piecing together nicely - like a great big massive jigsaw puzzle!!

To say this Challenge took place during a difficult time health wise for my youngest son would be a complete understatement.  In the 17 months since I started the Challenge he's been in Hospital 7 times, and will be admitted one more time before my birthday in May.  He's had between 16 - 18 weeks of IV antibiotics in this time and his lung function has dropped by nearly 40%.  Hoping that the main reason for said drop in lung function can be rectified with his next admission hopefully within 6 - 8 weeks for a Fundoplication to stop him refluxing his overnight feed up in to his lungs causing infection and making him cough all day long.  He tires really easy now - very little energy - so desperately sad to see how he struggles and he's only 12 years old.  He's gone through so much in his short life - more than most adults will ever go through in a life-time.  It's hard to explain to people who know nothing about Cystic Fibrosis just how much is involved in caring for a child with such high maintenance needs as Joe - breaks my heart to think of what the future might hold for him. 

My next Challenge takes place on Saturday - I'm UP the o2 Arena in London for a stroll with my husband!!  He's a bit scared of heights so I bagsy not being down wind of him when he gets to the top!!  We are doing the walk for our sons - first time I've ever done a Challenge with him!

In just over 3 weeks I'll be also doing a 50 mile Tandem Bike Ride with my friend, Rachael, who has a 1 year old niece with Cystic Fibrosis, around Clumber Park in Nottinghamshire - all support on the day appreciated!!  We'll need the encouragement for some of the hills we've had to tackle on our training rides!!  We hope to finish by 6 pm whereby we'll be having celebratory drinks and picnic and cake for Rachael's 22nd birthday!  Amazing place to cycle - and avoids the main roads which can be quite scary for novice riders like ourselves.   Personally when we get to a tough part - a big hill - I visualise all that Joe has gone through over the past year - I see the pain in his face during his recovery from his Gastrostomy - I see his sleepy face in Recovery after said procedure - then I see the 4 am dash to X-Ray after he'd vomited up his overnight feed and he'd retched so much that blood was coming out of his nose - the shear panic I felt trying to catch the sick - whilst using a foot to buzz for a Nurse - the dash to X-Ray to make sure infection hadn't set in to his PEG area in my nightie and slippers  going down the lift in the early morning with the Nurse.  No-one has ever seen the pain and suffering Joe has gone through in his life like I have - other than his Nurses.  However tough any challenge I underake in aid of the Cystic Fibrosis Trust is - nothing will ever be as tough as watching all that he's gone through over the past few years - or as tough as the amount of friends I've lost to Cystic Fibrosis to the point where I'm running out of tables to remember them all by at my Ball - ticket sales will allow me to remember 2 more friends on the night.

I'll try to keep this Blog updated regularly between now and my 50th Birthday in 79 days - loads to do - lot's of letters and e-mails to get sent out seeking donations for Sponsorship, Auction and Raffle - as well as securing more ticket sales - planning of the evening, running order, Compare notes, and so on - I want everyone to know what they are doing, when they are doing it, and so on, so that I can enjoy as much of the evening as possible with my family.

If you need a reason to support me, or help me in my quest to raise the £50,000 - the image below should spurr you on taken of Joe 8 days ago when he underwent an Endoscopy and PH Study to find out why his lung function is so low - it would appear that he is suffering from severe reflux with a % of 40, which is causing his overnight feed to reflux in to his lungs leading to infection/coughing all day long.

Personally, all I want is a Cure or a Deterrent for Cystic Fibrosis so that my sons can live a long and happy life - not a life filled with uncertainty, pain and suffering ... I want a LIFE UNLIMITED for every single person who lives with the truly cruel and unrelenting condition which is Cystic Fibrosis. :(






Village Fundraiser/BBQ/Head Shave

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 food for the Salad to go with the BBQ!  The Auction in the evening raised nearly £600 alone - thanks to the great Mick Sunderland for his wit and way of getting money out of people!  Many thanks to our amazing next door neighbours, Simon and Karen Waterhouse, who Sponsored the meat for the BBQ giving us 100% of the ticket sales, the marvellous Sheila, another neighbour who has watched the boys grow up - constantly reminding us of "what a little bugger" Dan was when he was a child(!)  and how much of a gentleman he is now, for selling the tickets for us and gathering in £100 in donations - she has a high regard for both boys.  Bothamsall Social Club Committee Members were fantastic at letting us have the hire of the hall for nothing, the marquette was erected for us, the grass cut and the bar manned from 3 pm onwards.  To lovely Anne who did the food to go with the BBQ and helped Simon cook the meat.  To the lovely Clare who did the Cake Stall for me, and her son Rio who did the Tombola.  The lovely Rachael who sold Raffle tickets for us and brought her family along to buy just about everything in sight!   Thanks to my two aunties who were roped in to doing the coffee and tea!  All the thanks in the World to my amazing husband who worked hard for days getting things ready, helping Simon to clean the Hall and set all the tables and chairs out - who humped everything there in his car taking several trips and humped everything back in the evening while I walked back with a bottle of wine under one arm pit, a glass of wine in one hand and some home made scones in the other!! 

Big thanks to Claire from Hair Flair in Tuxford who came to shave my hair in the evening delaying her holiday in Cornwall just to be there.  Hair is a bit fluffy feeling now!  Boys don't like it - I'm an embarrassment now - but it will grow back.  Damaged lungs don't mend - EVER.

We made an astounding £2018 on Saturday - more than doubled my wanted target.  To raise £500 in a small village like ours would have been great - I'd have liked to have thought we could make £1000 - we DOUBLED IT!!!  Everyone had a great time - it was hard work, but I have fantastic people supporting me and wanting me to get to that £50,000.  Just over £15,000 now - 30% of the target with a year to go.  Next target - £20,000 by end of July, then I might take a break ..... or maybe not!!

Lot's more planned for June from having a Stall at a Craft Fayre in Grantham on 6th June, Summer Facebook Auction starts on 5th June, Car Boot planned for June, Hair Flair at Tuxford are doing a leg of the Tour De France within the Salon from 15th June for me where they use an exercise bike in the Salon to do miles between styling hair for the week!!  My Auntie is having an Afternoon Tea on 4th July with proceeds to my target.  On-going are Logo Bugs and Wristbands - sold out of Fridge Magnets but more in stock from mid-July.  That's all for now .... more things in the pipe line!!

Pictues below of the Head Shave Event .... I need a hat - it's gone a bit cold out!! 




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.

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. 


50th Birthday Ball "Wish List"

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 the night of the Ball in order to make the night a success.  I hope to try and either get items donated or Sponsored so I can get the maximum amount of proceeds possible for my target. Some items I have already secured which have been donated, but below is what I will be looking for help with for the night.  If anyone can help me by either Sponsoring a part of the Night from Table Favours, to Decoration, Drinks Reception, Band, Balloons, Cakes, Candy Cart, Twinkle Backdrop, Photography etc, please do get in touch.  All Sponsorship/Donations will be recognised on the Evenings Programme and via all publicity generated for the Ball.  Some items have already been quoted for with cost in brackets - as and when further quotes arrive I'll put costs in bracket.  This is not a MUST HAVE list - it is a "Wish List" i.e. we all have things we'd like in life and we are all allowed to dream!  Dreams do sometimes come true though!!  (with a lot of work and support!)


  1. Balloons - for Auction Table, Silent Auction Table, Raffle Table, Entrance decoration.
  2. Table Centrepieces - KINDLY DONATED BY JULIE KELLY
  3. Seat Covers - KINDLY DONATED BY JULIE KELLY
  4. Table Favours - sweet jars.  (£150)
  5. Candy Cart (£150 - £200)
  6. Twinkle Backdrop for the Stage area
  7. Band/Disco (£995)
  8. Evening Programme Design/Print
  9. Table Plan
  10. Drinks Reception
  11. Donations for the Raffle
  12. Donations for the Auction
  13. Overall Sponsorship of the Event £5000
  14. Table Name Places
  15. Invitations
  16. Compare/Auctioneer (Sponsorship of £180)
  17. Items for Guests Gift Bags (Optional if I can't get enough items to fill them)
  18. Entertainments of some kind: Comedian, Ventriloquist, Dancers, Fire Eating (optional)
  19. Flowers placed around the room (optional)
  20. Chocolate Fountain (Optional)
  21. Helpers on the night to do RAFFLE and collect in monies from AUCTION.
  22. Decoration of Stairway up to Ball Room (flowers, drapes etc) (£40)
  23. Outside welcome area of SUPERCARS or HOT AIR BALLOON.
  24. Cupcake Stand.
  25. Topiary Tree's for the Entrance

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.





Helen and Emily and the Challenges Ahead

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. 





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