My story

Thanks for visiting my fund raising page  

 

After years of idleness and realising my advancing years I thought it was time I should start exercising. I had contemplated running but that looked far too much like hard work.

 

Soon afterwards I received a text from my MD suggesting we do the London to Paris bike ride and the seed of an idea was formed.

 

The London to Paris bike ride is exactly that, we leave Crystal Palace on 9 May and after averaging 75 miles a day; we arrive in Paris under the Eiffel Tower on 12 May.

 

My motivation as well as trying to get fitter was to raise a huge sum of money for a good cause close to my heart – The Children's Mitochondrial Disease Network.

 

You might be wondering, ‘what the hell are mitochondria?!’ 

 

So before I begin, let me explain. They are the body’s batteries within each cell in your body and provide power to all of the major organs. When enough mitochondria are not working correctly a disease may result. Mitochondrial diseases often involve the brain because of the tremendous energy requirements of brain cells.

 

A condition by the name of MELAS is a mitochondrial condition which hopefully you’ve been lucky enough never to have heard of. In fact, just 18 months ago, neither I nor any of my wife Claire’s family had ever heard of MELAS either.

 

In 1990, my wife Claire’s mum, Carol, suffered a 'stroke' at the age of 46. Over the course of the next 8 years, she suffered many more ‘strokes’, one after the other. The last 2 years of her life were spent being looked after in a nursing home which, at the age of just 52 was extremely heartbreaking.  After 8 years of suffering, Carol died in 1998 after ultimately being unable to do anything for herself, including eat, walk or talk.

 

Over 12 years later, in March 2010, Claire’s brother, Jason, unexpectedly suffered a ‘stroke’ at the age of just 39. This left him with speech and movement difficulties. Many tests were carried out, and a genetically inherited condition called ‘MELAS’ was diagnosed.

 

MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Strokelike episodes) is a cruel, progressive, neurodegenerative disorder. It is caused by mutations in the genetic material (DNA) in the mitochondria which we inherit from our mums via the egg which makes us.

 

This meant that Carol had not suffered with strokes after all, but had in fact suffered with MELAS as well which had been passed onto Jason.

 

There is currently no effective treatment or cure.

 

Jason fought the condition for just over a year, and during this time suffered 3 episodes of MELAS, each of which affected him in different ways. Because MELAS affects the brain, no two episodes of MELAS are the same as it depends on which part of the brain is affected.

 

The last attack was horrifyingly severe. Jason suffered hallucinations and was unable to tell what was real and what was imagined. The worst parts were when Jason was aware of what was happening to him, but we were unable to do anything to help him.

 

Jason died in April 2011 at the age of just 40.

 

Mitochondrial illnesses such as MELAS are not well known and therefore research into these conditions is not well funded. My motivation for doing this bike ride is to raise awareness and funds into how to treat this horrendous condition which unfortunately has affected my family on more than one occasion.

 

Your generous sponsorship will help to support The Children's Mitochondrial Disease Network. This is the UK's only charity dedicated to providing information and support for all Mitochondrial Disorders.

 

Jason was an amazing person who packed so much into his 40 years. He was full of life and was extremely funny, kind and generous. It was a privilege to be his brother-in-law, and I know he is missed by all who knew and loved him. In his memory, I’m determined to complete this bike ride and do him proud.  Plus, I know exactly the ribbing Jason would give me if I bottled it now.

 

So Jason, this one’s for you.

 

Paul

My updates 1

Thank you to everyone who has donated. The challenge achieved all I had hoped, helping to get fit, enjoying once again the freedom of cycling and more importantly, raising a great sum of money for the Children's Mitochondrial Disease Network. Thank you all again Paul x

07/06/12 21:53

My charity

Children's  Mitochondrial Disease Network

Children's Mitochondrial Disease Network

Charity Registration No. 1070533

The Children's Mitochondrial Disease Network is the only UK charity dedicated to providing information and support for all mitochondrial disorders, to families, carers and professionals. CMDN was set up initially in 1998. Proving 24hr support, so no family may never feel isolated again.

Donations 91

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Donation by Andrew Purdy on 02/08/12

£30.00

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I saved £1 for every lb I lost in weight, to donate to this very worthy cause. Well done Paul !

Donation by Joan Porter on 29/06/12

£15.00

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Well done Paul! We are very proud of you! Love Ash, Beads and the Beadlets xxxx

Donation by Clare Harvey on 30/05/12

£20.00

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Well done Paul! We are massively impressed! Lauren and Mike xx

Donation by Lauren Holland on 23/05/12

£40.00

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Well done Paul! Love Leah, Graham & Georgia x

Donation by Leah Richmond on 18/05/12

£20.00

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Well done Paul! Jasey was one of my best mates and I miss him dearly. I knew him from the age of 11. A big glass of Jasey JD & Coke to you.

Donation by phil cunliffe on 16/05/12

£25.00

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Well done Paul, amazing achievement! x

Donation by Anna Thomas on 14/05/12

£20.00

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Well done Paul.

Donation by steve chapman on 10/05/12

£20.00

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good luck mate we know you can do it

Donation by terry milburn on 10/05/12

£25.00

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Good luck Paul

Donation by James Hancock on 08/05/12

£25.00

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At last, finally the day has arrived, Paris here we come. Good luck Kev

Donation by kevin groves on 07/05/12

£40.00

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Good luck mate, looking forward to the challenge with you

Donation by Del Parcell on 06/05/12

£20.00

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Best wishes for a trouble-free trip. Susan & Deryl (Rhian's aunt and uncle )

Donation by Susan Jarvis on 05/05/12

£20.00

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London to gay Pari is the way, the cause will get you through the day. At the 11th hr you'l soon real-ize that your A*** H*** has doubled in size! X

Donation by Gra, Sue, Sam, Tom X on 05/05/12

£25.00

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Best of luck Paul. Perhaps Claire could rub some of Henry's Sudocrem into your sore bum when you reach Paris! A Worthy cause. From Louise, Si & Alex

Donation by Louise Cole on 03/05/12

£25.00

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Good luck Paul, hope the weather is good and that you don't suffer too much from the saddle! We'll be thinking of you, and Jason. x

Donation by Kath, Ian & Rhiann. on 02/05/12

£25.00

Good luck Paul, great cause, do it for Jason.

Donation by Edward Joynt on 02/05/12

£50.00

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Good luck Paul! Rather you than us! xxx

Donation by Amber, Nick & Betsy Jones on 01/05/12

£10.00

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Come on dad !! My dad is the best dad in the world. He can do it easy. Sorry it not more, but £10 is a lot of money to me, at the moment.

Donation by Henry Jason Martin on 01/05/12

£10.00

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Good Luck ! You can do it, just keep those little legs moving.

Donation by Auntie Edith and Uncle Jim on 01/05/12

£20.00

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We are friends of Jason's dad and stepmom in Michigan USA. This is a Great cause and Good luck.

Donation by Rosemary and Jim Melton on 01/05/12

£15.00

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So proud of you Paul, for raising the profile of these terrible mitochondria conditions. Jason will be with you, all the way.

Donation by Geoff and Carol Brindle on 30/04/12

£100.00

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Good Luck Paul - I hope your saddle is comfy

Donation by Alexandra King on 30/04/12

£20.00

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Donation by Nicola Surman on 29/04/12

£20.00

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It's a great thing you're doing Paul, well done

Donation by Richard Walsh on 26/04/12

£20.00

Donation summary

  • * Online donations$5,007.35
  • Offline donations$829.53
  • Text donations$0.00
  • Total raised$5,836.88
  • Gift Aid$0.00

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