Drayton fun day for charity that helps boy with rare condition
PUBLISHED: 12:00 15 October 2011
Archant copyright 2011
A father is putting himself up for auction to raise money for a charity which has helped his son who suffers from an extremely rare condition.
Simon Appleyard, of Beecheno Road, Larkman, will be up for sale together with seven other men as part of a Drayton pub’s fundraiser for East Anglia’s Children’s Hospices (EACH).
Mr Appleyard’s son Leo, who turns two later this month, suffers from Mowat-Wilson syndrome and is helped by the charity.
The genetic condition means Leo has had two heart operations in his short life, suffers from learning difficulties, which means he is unlikely to speak normally, has eating problems, sleep issues and is still unable to sit unaided.
Mr Appleyard’s wife Lydia, 30, said the condition is extremely rare, with only around 200 registered cases across the world.
She said the couple found out Leo had a heart condition and club foot after her 20-week pregnancy scan, but the condition was not diagnosed until after birth.
Mrs Appleyard has had to give up her job at a kitchen showroom to be a full-time carer, and said that the only respite the couple receive is one night a month from the charity.
Mrs Appleyard said: “The respite they give us means everything to us. It gives us something good to look forward to, as we know that once a month we can go out for a romantic evening and know Leo is safe.”
She added that having registered nurses who could give them advice is also vital.
Her husband Simon, 28, is assistant manager at The Cock Inn, Drayon, and when the new manager said he wanted to hold a charity fun day, staff suggested raising money for EACH or “Leo’s charity” as they know it.
The fun day, featuring a ‘man auction’ which entitles winners to three hours of chores, a bake sale and raffle, takes place on Friday between 11am and 3pm.
•For more on the event visit www.justgiving.com/cock-inn
•Are you holding an event for a charity close to your heart? Contact reporter Richard Wood on 01603 772423 or email email@example.com
EACH supports families and cares for childen and young people across East Anglia. It needs to raise £4.8million to deliver services this year. To find out more visit www.each.org.uk.