Steve Janetta and his partner Marina Waymouth raised nearly £7,000 as they walked over 100 miles around West Yorkshire drumming all the way. The pair undertook this huge feat of endurance to support nine year old Grace Hitchens and her charities Niemann Pick and Martin House Hospice.
Grace, from Bingley, suffers from Niemann Pick Type C, a life limiting neurodegenerative condition which means that sufferers lose skills, including the ability to talk, walk and eat – and which took the life of her elder brother Harry in 2010 when he was seven.
Grace also has a twin sister, Emily who is unaffected by Niemann Pick type C. Early onset of this condition means that children rarely survive beyond teenage years. And now, NPC – which affects only 50 children in the UK – is tightening its grip on Grace’s abilities.
Only last year Grace was able to walk unaided, now she needs adult support. And she can no longer say mummy, daddy or Emily which is devastating to her parents, Fiona and Carl.
Steve, who is a drumming teacher in Baildon, and his partner, Marina were so moved by Grace’s plight that they decided to march into action. He said: “I heard about Grace’s condition through her aunt, who I teach to play drums.”
“It was a whole lot tougher than either of us ever thought. We were really lucky with the weather, but putting walking boots back on blistered feet, knowing we had 20 miles to walk through industrial estates and up steep Yorkshire banks was at times incredibly difficult.
“We had some real highs, such as the welcome we received from everyone at Eureka in Halifax and one special moment that really stood out for Marina and I was a group of childminders with their children who had waited to greet us in Liversedge.
“Fundraising is still going strong for Niemann Pick as Grace’s family work hard to raise awareness of this condition in a bid to help generate more funding for research as well as the fabulous support that Marin House Hospice offers children and their families.”