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Jason Harwood avatar
Jason Harwood

2 Fat Armourers Coast to Coast

Fundraising for Lowe Syndrome Trust

172 %
£6,031.00
raised of £3,500 target
by 49 supporters
Donate
  • Event: jason harwood's Fundraising Page

Lowe Syndrome Trust

We Drive and fund Medical Research to improve lives of Lowe syndrome families

Charity Registration No. 1081241

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!

Photos

2
  • Benjamin at 17 months (Nov 2008)
  • Me and Benjamin (June 2009)

Supporters

49