Raised: 170%
Target: £3,500.00
Raised so far: £5,955.00
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My story

 

Way back in June 2007 my wife gave birth to our adorable son Benjamin (see picture).  Within 2 hours of being born it was discovered that Benjamin had bi-lateral cataracts it wasn't until the next day that it became apparent that he possibly had Lowe Syndrome.  Lowe Syndrome is also known as OCRL (Oculo-Cerebro-Renal) syndrome.  The syndrome is caused by a DNA mutation - a single defective gene on the X-chromosome - that results in the lack of an enzyme. The mutation can occur without any family history (a spontaneous mutation) or may be inherited through the mother. Babies are born with bi-lateral cataracts, hypotomia (muscle weakness), kidney problems (wasting of essential nutrients) impaired growth, intellectual impairment and later may suffer brittle bones, arthritis, rickets, epilepsy (seizures) and behavior problems (autistic spectrum disorder). Many also have cysts and dental problems.  

As the months went by he had his cataracts removed at 8&9 weeks old and now had a peg into his stomach for feeding (lowes children struggle to thrive).  On top of these problems he also has problems with his kidneys which means that he has supplements in his food everyday.  Benjamin is a happy little boy but due to having Lowe Syndrome he will probably not live into his 30's and may always need constant care (which his dedicated mum provides everyday).  He has learning difficulties which coupled with low muscle tone means that the development of his mobility is delayed meaning he may never walk or it will take longer than most children. 

This is just a little background about my own son but to help all the sufferers of Lowe Syndrome myself and a friend (Adam Fitzsimmons) are planning to cycle the width of the country, starting at holyhead ferry terminal (wales) and finishing at cromer pier (Norfolk).  We plan to take only 3 days averaging approximately 100 miles a day.  The dates for this event will be from 30th August - 1st September 2009.  

Donations would be gratefully received and would go towards funding research that can help to extend the lives of these cheerful, loveable and friendly children.   

Thanks for visiting my fundraising page.

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Lowe Syndrome Trust gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

So please sponsor me now!

Well done lads. A fantastic achievement for everyone. Donation by Macca 30/10/09  

£10.00 + £2.82 Gift Aid

Donation by Anonymous 15/10/09  

£1,365.00 + £385.00 Gift Aid

collection made on station main gates Donation by jason harwood 14/09/09  

£330.00

Well done son Hope the knees get better soon. Donation by dad & sally 14/09/09  

£420.00 + £118.46 Gift Aid

What an accomplishment - nice one ! Donation by Gareth Ford 04/09/09  

£10.00 + £2.82 Gift Aid

Well done Jase & Co, we knew you'd pull it off! Adam & Bren Donation by Adam O'Sullivan 01/09/09  

£25.00 + £7.05 Gift Aid

Well done boys. I'm so proud of you both and delighted with the amount you have raised. Donation by Bec Harwood 01/09/09  

£50.00

Sorry about the delay Jase/Fitz, Good Luck guys and I hope it goe's well. Send me some feedback when you return. Donation by Daniel Lenham 01/09/09  

£20.00 + £5.64 Gift Aid

Good Luck 2 u both!! Our thoughts will be with you every pedal you take!! And thats a lot of pedaling!! Donation by Paul & Nick Howard 27/08/09  

£50.00 + £14.10 Gift Aid

Donation by Alma and Katy 26/08/09  

£20.00 + £5.64 Gift Aid

Good luck! may there be more down than uphills... Donation by Dave Smith 25/08/09  

£100.00 + £28.21 Gift Aid

Good look Roomy hope all goes well :) Donation by Smiler 25/08/09  

£10.00 + £2.82 Gift Aid

Good luck and I hope you raise your target for a charity so close to your heart. Make sure Dave supports you well and mops your brow when needed!!x Donation by Laura-Jane Kneller 12/08/09  

£10.00 + £2.82 Gift Aid

Hey Ad and Jase, Good luck to you in your amazing journey!! Will be waiting with Em and the boys at the end! Just do it! Love Sarah xx Donation by Sarah Staniforth 10/08/09  

£25.00 + £7.05 Gift Aid

Raised from the TMSF horse racing night Donation by jason harwood 06/08/09  

£435.00 + £122.69 Gift Aid

Good luck lads. Hope it all goes well! Donation by Goody 24/07/09  

£10.00 + £2.82 Gift Aid

All the very best for your bike ride - we live next door to your mother! Donation by John Kitson 30/06/09  

£10.00 + £2.82 Gift Aid

Enjoy the ride and raise loads of money! You don't know me, I work with your Dad. Good luck! Donation by Julian Bailey 27/06/09  

£10.00 + £2.82 Gift Aid

Good luck Donation by Mum & Andy (Nan & Grandad) 29/05/09  

£10.00

Donation by From ERAS & ATC Donations 29/05/09  

£35.00

Good luck and all the best Donation by Richard & Sharon Morter (Grandpa & Gran) 29/05/09  

£100.00 + £28.21 Gift Aid

Good luck fellas, hope this helps! Donation by Iain Clarke 29/05/09  

£30.00 + £8.46 Gift Aid

Donation by Adam 28/05/09  

£10.00 + £2.82 Gift Aid

Donation by scott pringle, eras 01/05/09  

£10.00 + £2.82 Gift Aid

Good luck lads Donation by Dave B 08/04/09  

£20.00 + £5.64 Gift Aid

Good luck with the ride lads, Keep up the hard work training. Donation by Lloyd Johnson 07/04/09  

£25.00 + £7.05 Gift Aid

Hope this helps a little for benjamin and everyone else. Good luck with the bike ride Donation by Eamon and Mags Dillon 05/04/09  

£25.00

Good luck for your cycle ride Jase and Adam..I will be spurring you on. Donation by Carolyn Barnes 29/03/09  

£50.00 + £14.10 Gift Aid

For Benjamin! Donation by Dave Wilcock 20/03/09  

£10.00 + £2.82 Gift Aid

Good luck and best wihes to you both. Donation by Nicki and Vince 09/03/09  

£25.00 + £7.05 Gift Aid
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* Total raised online: £3,755.00
  Offline donations: £2,200.00
  Gift Aid plus supplement: £926.54

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