This summer, I will be cycling from Land’s End to John O’Groats to raise money for The Lowe Syndrome Trust. The target is to cycle approximately 100miles a day, completing the ride in 9 days.
Here’s how it all came about...
In August 2009 myself and a colleague, Jason Harwood, along with a support crew cycled from Holyhead in Wales to Cromer on the east coast of England, a total of just over 300 miles in three days. Our aim was to raise £3,500 to donate to the charity, The Lowe Syndrome Trust. Jason’s son, Benjamin (pictured) was diagnosed with Lowe Syndrome within days of his birth. In total, we raised over £6,000 for this worthy cause.
This rare syndrome is caused by a DNA mutation - a single defective gene on the x-chromosome - that results in the lack of an enzyme. Within 2 hours of being born it was discovered that Benjamin had bi-lateral cataracts and it wasn't until the next day that it became apparent that he possibly had Lowe Syndrome. Benjamin had his cataracts removed at 8 and 9 weeks old and then had a peg put into is stomach to help with feeding, as Lowe’s children often struggle to thrive. He also has problems with his kidneys for which he requires supplements in his food every day. He has learning difficulties, which coupled with low muscle tone means that the development of his mobility is delayed and he may never walk or it will take longer for him to learn than most children. Benjamin is now four years old and is a happy little boy; his diagnosis with Lowe Syndrome means he will probably not live into his 30's and may always need constant care (which his dedicated mum provides every day).
The Lowe Syndrome Trust was established 10 years ago by the parents of a Lowe’s child, who struggled to find any information about the syndrome once their child was diagnosed. The charity aims to support families and provide much needed funding to various research projects in order to better understand the condition.
This time around, Jason and I have persuaded three friends to cycle with us, along with a crew to provide the much needed support along the way. For more information please visit Jason’s Just Giving page ‘TMSF Coast to Coast’ or http://www.justgiving.com/tmsf-lejog
Thank you for taking the time to read my page. Please, donate whatever you can and spread the word by sending this page to as many people as possible.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
