AN INSPIRATIONAL boy who will go on a pilgrimage around the UK to meet people who have supported his struggle with an incredibly rare degenerative condition has been nominated for an award for his bravery.
Up until he was two years old, Lewis Jeynes, of Bessacar, Doncaster, was reaching all the regular milestones, beginning to crawl, walk and talk, just as his parents expected.
But shortly after he turned two, he developed a limp. In his mother Samantha Tolmie’s words, “this started six months of watching Lewis deteriorate before our eyes”. He developed seizures, and soon could not stand or sit up, and eventually lost the ability to swallow and speak.
Despite years of the unknown, tests, operations and lengthy hospital stays, all the while with Lewis deteriorating further, he was only diagnosed with a rare form of the degenerative neurological condition Batten Disease in July last year, when we has 10 years old.
Neuronal Ceroid Lipofuscinosis is so rare in fact, that Lewis is one of just five children in the world to have been diagnosed. Sadly the condition is terminal and Lewis is not expected to live past his mid teens.
But Lewis, who is unable to communicate, requires 24 hours a day care and breathes through a tracheotomy, is a smiley, happy little boy, who loves animals and being in the outdoors, and his story has inspired people from around the world to donate to help fund a ‘wish list’ of trips and activities.
Lewis’s UK Pilgrimage, which has already raised more than £7,000, will see him visit people who have donated to the specially set-up fund in the little boys name, and people who have provided support through the Post Pals scheme, SWAN UK and Strongbones.
“We’d been told twice that it wasn’t Batten’s, mainly due to Lewis’ eyesight having not been effected, so to have this diagnosis at last, and to realise we don’t have much time, was massive,” Ms Tolmie said
“Everyone talks of a ‘bucket list’, including things like a trip to Florida or Disney World, but we can’t do that. But we’ve been supported by so many people over the years that we’ve never met, we would like to take the opportunity to meet some in person and thank them.
“It’s so overwhelming to think of the support we have received, and we’re hoping that we can now raise greater awareness of Batten Disease, which is such a horrific illness.”
Although Lewis’s medical needs means it is difficult to plan trips in advance, the pilgrimage will start with an overnight trip to Leeds on Friday for the Yorkshire Children of Courage Awards.
Lewis has been nominated in the Outstanding Bravery category in the awards by his father James Jeynes.
“Lewis inspires so many people,” he said. “We don’t get many positives, so to be able to put your child forward to be recognised among a group of children who are also so brave is such an important thing. Drawing attention to Lewis can only help to raise awareness of the type of things he and other children like him have to go through.”
The Lewis Jeynes Fund has raised more than £40,000 to help provide care and support to children who have undiagnosed neurological degenerative conditions.
As well as helping towards Lewis’s care, it has helped other children by purchasing equipment, respite care and larger items like a hydrotherapy pool.
Tickets are still available for the Yorkshire Children of Courage Awards, which take place at the Royal Armouries in Leeds, this Friday, October 10.
The ceremony, presented by BBC presenter Steph McGovern, includes entertainment from tenor Jonathan Ansell anddiner by Aagrah Restaurants. The Yorkshire Post is the media partner of the awards, and will provide full coverage of the event. As well as honouring the bravest and most courageous children in the region, the awards raise money for the St James’s Place Foundation, which supports disadvantaged youngsters.
To purchase tickets visit www.yorkshirechildren.co.uk