Photo Gallery: 4-year-old Bowthorpe boy battles Mowat-Wilson syndrome
For most four-year-olds a trip on a train or bus is an exciting adventure. But for little Leo Appleyard it’s an experience that is one of fear and struggle.
The youngster from Bowthorpe is sensitive to noises and vibrations because he suffers from the genetic disorder Mowat-Wilson syndrome – one of only 200 people in the world to do so.
Getting him on and off a bus can end in arguments when people don’t realise that Leo’s wheelchair is not a normal pushchair and he cannot be just be taken out of it.
Born with a club foot and a heart condition, as a new-born baby Leo was operated on. But this only scratches the surface. Mowat-Wilson has left him missing the corpus callosum part of his brain and he suffers from severe learning difficulties and epilepsy.
Leo is also non-verbal and is only able to speak the world “mum” and has mobility problems which require him to have leg splints and the use of a special wheelchair. If that wasn’t enough, he is being tested for Hirschsprung’s disease, a rare disorder of the bowel.
“He can’t hold a bottle but we’re practising it,” said Leo’s mother Lydia Appleyard, 32.
“But he’s four and a half. My friend’s little girl by the time she was six months was holding her bottle, Leo can’t do that. He can’t feed himself or ask for anything and he’s still in nappies.”
In August Mrs Appleyard is attending a meeting for UK families that are affected by Mowat-Wilson in Tamworth. It will enable her to interact with other parents who understand her situation and meet other children who share her son’s rare condition.
Despite all his illnesses Leo is a very happy little boy and having just recently learnt to clap he is eager to show people what he can do. Mrs Appleyard and her ex husband Simon stress that despite his problems, it does not dampen his spirit.
“We are very positive about Leo and I will happily explain him and his condition to anybody. But it always ends the same way, he’s happy.
“He is cheeky, and he has bad days-when he has a seizure he is upset and clingy for a few days after- but he’s such a happy little boy.
“We had a six months review at the Clare school [a Specialist Physical Sensory Complex Needs School] which Leo attends two days a week, and the teacher said he’s always happy, blowing raspberries and clapping.”
A quiz is being held at Number 12 bar and restaurant on Farmers Avenue, Norwich, on Monday to raise funds for a taxi to take Leo and his mother on the 316 mile round trip to Tamworth.
After telling her friends how upset she was that she could not afford the money to get a taxi to the meeting, and with other forms of public transport out of the question, they took matters into their own hands by asking the landlord of Number 12, Richard Elkin, if a quiz night could be used to raise money towards the trip.
“I can’t believe my friends are doing this for me. When they said a quiz was going to be held for Leo, I was gobsmacked and burst into tears.”
Mrs Appleyard is also very grateful to her local taxi firm Green frog for offering to take her and Leo on the long trip to Staffordshire and back.
• The quiz on Monday starts at 6.30pm.
• Tickets are £7 including a meal.
• To donate prizes or for more information, visit www.number12norwich.org or call 01603 611135.