Making Bessacarr boy Lewis’ dreams come true Published: 23 August 2014 A community is rallying behind a fundraising campaign to help a young boy with a terminal illness to fulfil his ‘bucket list’. Lewis Jeynes, 10, suffers from a form of Batten disease that is so rare it took doctors more than seven years to fully diagnose. He is believed to be one of only five children in the world with the Neuronal Ceroid Lipofuscinosis (NCL) KTCD7 gene variant of the disease and is not expected to live beyond his mid teens. But the brave youngster and his family are determined to make the most of life and have come up with a ‘bucket list’ of places he wants to see around the UK. Friends and family in Goldthorpe are now supporting an appeal to raise £10, 000 to help make his dreams come true. Mum Samantha Tolmie, 45, of Grange Road, Bessacarr, said: “Lewis is such an inspiration. He is in so much pain and it is heartbreaking as a mother to see but he still manages to smile. “You can’t help but fall in love with him when you meet him. We just want to help him to have a happy life.” Lewis’ inherited disease means he suffers up to 40 seizures a day and is unable to move, speak or eat unassisted. He uses a wheel-chair, is tube fed and has a tracheotomy fitted to help him breathe. He had numerous blood tests, biopsies and MRI scans for Batten disease when he developed a limp after his second birthday but doctors were left baffled after they all came back negative. His condition was so rare that he was only diagnosed in July after specialists at Cambridge University studied his DNA for three years. As part of his wish list he wants to go on a boat trip off the coast of Cornwall, visit the London Eye and Natural History Museum in London, go on a hot air balloon ride and see the Lion King show in the West End. He also wants to visit people from across the country who have sent cards and gifts through the Post Pals scheme, in which people can support causes for ill youngsters nationwide. The idea is to raise around £10, 000 to pay for the ‘Lewis’ UK Pilgrimage’ to send him on a road trip in a specially-adapted ambulance around the country. The fund has already raised more than £6000 since launching in July. Close friend Nicola Carr, 30, of Holly Grove, Goldthorpe, has helped to organise two fundraising events for the cause. The gala days, featuring a range of stalls, games and activities, will be held in the grounds of Dearne Advanced Learning Centre in Goldthorpe on Saturday and Sunday, August 30 and 31, from 9am to 5pm. It will be hosted by Dearne and District Football Club who have chosen Lewis’ cause as their annual charity. Ms Carr said: “We all just want to help Lewis to live the best live he can. He is so brave.” To support his fundraising campaign visit gofundme/bmyltg
Posted on: Sat, 23 Aug 2014 12:16:08 +0000