<p>I first met Jim and Jenny when I joned Lely in March 2009. They are both really great people who have inspired many others with their charity work over the years. In 2002 Jim and Jenny were given the devastating news that 2 of their 4 children had a progressive degenerative illness (Metachromatic Leukodystrophy - MLD) that would greatly limit their lives. As the illness progressed their 2 boys lost the ability to walk, talk, eat or have any control over their bodies leaving them totally dependant on others for their daily care.</p> <p>Jack and Michael never complained and their gentle nature and bright blue eyes won the hearts of anyone who was lucky enough to meet them. The family were not left to cope alone but had and still continue to have, great support from family, friends, community nurses and the Northern Ireland Children's Hospice. The hospice provides respite care and support for the whole family. The care is second to none and greatly appreciated by the families of life limited children who use their services. The funding for the hospice comes mainly through donations and fund raising events.</p> <p>Sadly, in August 2010 Jack died aged 15. At Jack's funeral I was touched by the love, joy and happiness Jack had brought to so many and saddened that such a young life had been cut short. For the last 7 years of Jack's life both Jack and the family were offered invaluable help and care from the NI Children's Hospice, this support continues today for Michael and for the family as they cope with the loss of Jack.</p> <p>The Marathon des Sables is 'The Toughest Footrace on Earth' - 252 km in 7 days carrying everything you need (except the Bedouin tent)! This year's race was held from 1-11 April and Jack inspired me crossing the desert and I hope will inspire you to make a donation to the NI Children's Hospice. Every &pound;100 we raise pays for one nights care. I covered all of my own costs so every &pound; you donate goes directly to the hospice.</p> <p>Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never send them on or send unwanted emails. Once you donate, they send all of your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation made by a UK tax payer. So it's the most efficient way to donate -&nbsp;we raise more, whilst saving time and cutting costs for the charity. Thank you!</p> <p>For more info please click on these links:</p> <p><a title="Live Race Tracker (I am number 846)" href="http://www.titandesert.com/imgnewsletter/26MDS.liveracetracker.com">http://www.titandesert.com/imgnewsletter/26MDS.liveracetracker.com</a></p> <p><a title="NI Children's Hospice" href="http://www.nihospicecare.com/index.php/NIHospice/childrens-hospice.html" target="_blank">http://www.nihospicecare.com/index.php/NIHospice/childrens-hospice.html</a></p> <p><a title="MdS Photos and Results" href="http://www.darbaroud.com/index_uk.php">http://www.darbaroud.com/index_uk.php</a></p> <p><a href="http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy">http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy</a><!--st1\:*{behavior:url(#ieooui) } --><!--[if gte mso 10]> <mce:style><! /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} > <! [endif] ></p> <p>I first met Jim and Jenny Irwin when I joined Lely in March 2009. They are both really great people who have inspired many others with their charity work over the years. In 2002 Jim and Jenny were given the devastating news that 2 of their 4 children had a progressive degenerative illness (Metachromatic Leukodystrophy - MLD) that would greatly limit their lives. As the illness progressed their 2 boys lost the ability to walk, talk, eat or have any control over their bodies leaving them totally dependant on others for their daily care.</p> <p>Jack and Michael never complained and their gentle nature and bright blue eyes won the hearts of anyone who was lucky enough to meet them. The family were not left to cope alone but had the still continue to have great support from family, friends, community nurses and the NI Children's Hospice. The Hospice provides respite care and support for the whole family. The care is second to none and greatly appreciated by the families of life limited children who use their services. The funding for the hospice comes mainly through donations and fund raising events.</p> <p>Sadly, in August 2010 Jack died aged 15. At Jack's funeral I was touched by the love, joy and happiness that Jack had brought to so many and saddened that such a young life had been cut short. For the last 7 years of Jack's life both Jack and the family were offered invaluable help and care from the Northern Ireland Children's Hpospice, this support continues today for Micahel and for the family as they cope with the loss of Jack.</p> <p>The Marathon des Sables is 'The Toughest Footrace on Earth' - 243 km in 7 days carrying everything you need (except the Bedouin tent)! This year's race will be held from 1-11 April and Jack will inspire me crossing the desert and I hope he will inspire you to make a donation to the Northern Ireland Children's Hospice. Every &pound;100 we raise pays for one nights care.</p> <p>Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they never sell them on or send unwanted emails. Once you donate, they'll send all of your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation made by a UK taxpayer. So it's the most efficient way to donate - we raise more, whilst sdaving time and cutting costs for the charity. Thank you!</p> <p>For more information please click on these links:</p> <p><a title="NI Children's Hospice" href="http://www.nihospicecare.com/index.php/NIHospice/childrens-hospice.html" _mce_href="http://www.nihospicecare.com/index.php/NIHospice/childrens-hospice.html" target="_blank">http://www.nihospicecare.com/index.php/NIHospice/childrens-hospice.html</a></p> <p><a title="MdS" href="http://www.saharamarathon.co.uk/" _mce_href="http://www.saharamarathon.co.uk/" target="_blank">http://www.saharamarathon.co.uk/</a></p> <p><a title="Metachromatic Leukodystrophy" href="http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy" _mce_href="http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy" target="_blank">http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy</a></p> <p>&nbsp;< >< >< ><--></p>