Flo Craig & Friends

Florence Craig is raising money for Children's Liver Disease Foundation
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24 Hour Bike-A-Thon · 31 January 2013

PLEASE NOTE - The CLDF platform will be closing end of January as we have merged with the British Liver Trust. Please visit www.justgiving.com/blt to set up your fundraising page. For more information please email fundraising@britishlivertrust.org.uk

Story

On Friday the 1st of March 2013, my friends and I will be completing a sponsored 24 hour Bike-A-Thon in aid of the Children's Liver Disease Foundation.

The charity is very special and have helped myself and many others with Liver conditions. I don't often tell my story, but I hope by sharing it now I will help raise lots of money for the charity...

At the age of 11 I became tired and ill. After a long diagnostic process I was transferred to Birmingham Children's Hospital and diagnosed with Autoimmune Liver Disease, a life-long liver condition. There is no cure, but there are certain treatments, but luckily for me the medication got me in remission before too much damage was caused to my liver.

The treatment had many unpleasant side effects such as weak bones, weak ligaments and weight gain. However once I was in remission I felt better and began to lose the weight again. Unfortunately my ligaments and bones were still weak so I fractured my fingers, my spine and had multiple stints on crutches. It was painful, but most of all it was frustrating because I could no longer take part in sports that I enjoyed. Yet at least I felt better!

However a year after my diagnosis I felt ill again. I had scans which showed that not only my liver was damaged, but also my bile ducts and gallbladder. The doctors then told me that I had another, even rarer liver disease called Sclerosing Cholangitis. Like my other liver disease it has no cure, but it was also degenerative with no real treatment except an eventual liver transplant. However with some extra medication I felt a little better again and I was back in remission for both conditions.

Over the next few years I was generally well, with only 4/5 hospital admissions. Due to my low immune system I picked up lots of different viruses and infections, including one which caused my kidneys to become faulty.

In January 2012 the decision was made to reduce some of my treatment because I was doing so well, but unfortunately my body did not like the change in medication and the diseases came back. I had to go through 3 high dose steroid treatment cycles due to my blood results and scans being the worst they'd ever been. During the summer of 2012 I became more ill and that meant more hospital visits. I went back to Birmingham.

At this time I was tired all the time, vomiting, in pain and yellow due to poor liver function. I was also very itchy due to unprocessed acid leaving the liver and irritating my veins and skin. I felt the worst I had ever been and my consultant could see there was something wrong. I had scans that showed alot of disease progression and 3 times as much damage and inflamation as before. I had another cycle of treatment which controlled my Autoimmune Liver Disease, but not the Sclerosing Cholangitis.

My Sclerosing Cholangitis is still very active today. I take 14 tablets and 2 liquid medications daily, but in a way I know that I am lucky because at least I have not needed a liver transplant yet, as some of my friends have needed one. However I know that one day a tranplant will be likely, but there is no telling how far away it will be.

I get tired easily, have pain, fainting spells, a lot of itching, malabsorbtion of vitamins and fat due to poor bile flow (resulting in weight loss) and my ligaments are still weak, but I try and stay positive.

The Children's Liver Disease Foundation have been there for me every step of the way. I have met many friends with liver conditions through CLDF and have been given so much support. They have also funded multiple holidays for myself to meet other teenagers with rare liver diseases.

The charity is amazing. They deserve so much recognition. They have funded much vital research into conditions like mine. 30 years ago the survival rate of childhood liver diseases was 10%, now it is 90%. I can't thank them enough.

Please dig deep into your pockets to sponsor me and my friends. CLDF need the money to keep doing such an amazing job. And remember, childhood liver diseases are no ones fault, they are not caused by alcohol, drugs or other things. They just happen. I hope that I can raise £150 or more on my JustGiving page and lots more money with my friends through face-to-face sponsorship.

I want to thank Kay, Meg, Emily, Emily, Celeste, Rosie and Julia for agreeing to this mad challenge with me!

THANK YOU FOR READING!

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Donation summary

Total
£903.35
+ £95.00 Gift Aid
Online
£503.35
Offline
£400.00

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