Cystic Fibrosis Fundraisers

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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. :(






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