A MAN with muscular dystrophy is once again staging a Christmas concert with his father to
A MAN with muscular dystrophy is once again staging a Christmas concert with his father to raise money for charity.
Matthew O’Sullivan, 27, of Lea Road, Sonning Common, and his father Peter, 57, from Gallowstree Common, have organised Spirit of Christmas for the past six years.
They have raised more than £20,000 for Muscular Dystrophy UK, which supports research into treatment of the condition.
This year’s concert will take place at the Christ Church Centre in Henley next month.
There will be carols, readings, choir music and poetry. This will be followed by a reception with wine and seasonal fare.
Mr O’Sullivan was diagnosed with Duchenne muscular dystrophy when he was four. It is a type of muscle wasting disease which has become progressively worse as he has got older and he has been in a wheelchair for most of his life.
Three years ago, he had a tracheostomy to help him breathe and now he needs a ventilator 24 hours a day.
Mr O’Sullivan said: “It can be quite intrusive but I can hide it with a scarf if I need to.”
He was brought up by his father and mother Jane, together with his twin sisters, Hannah and Amy, 29.
He said: “Growing up for me was okay because of the support of my family. I have friends with the condition who found it more difficult.
“Dad and mum treated me normally, so if I did something wrong they would tell me off.”
Mr O’Sullivan attended Ryeish Green School, near Three Mile Cross, which is now closed, and then studied at Thames Valley University where he gained skills in graphic design, animation and website design.
He started his own business, MOS Creation, which he runs from his office at home, where he lives with his girlfriend, Lizzie Waters, 30. He designs all the promotional posters, leaflets and programmes for the Spirit of Christmas events.
Mr O’Sullivan said: “I work from home because it means if I am in pain or have any other issues with my disability I can take the time off and do work when I can.
“I make a point of getting in the office and working nine to five and will do weekends if I need to.
“Trying to find employment was difficult so being self-employed is definitely better for me. At the end of the day it’s a way of dealing with the inevitable that something is going to happen.
“I think I deal with it in the right way by getting on and trying to have a life and not let it affect me.”
He regularly attends meetings of Sonning Common Business Collaboration, which take place every six weeks at the Butcher’s Arms pub in Blounts Court Road.
Mr O’Sullivan said: “I’ve been going since it started and Kathryn Fell, who runs the group, is really good. I’ve helped her with projects. It’s an amazing group.”
His father, who is an insurance broker in High Wycombe, first became involved with the charity more than 20 years ago.
He said: “The charity provides support for families as well as providing equipment. There is a whole network of people involved who we can share ideas with.
“When people first get involved with the charity they don’t know much about the condition. It affects people in lots of different ways and the charity helps people with information.”
Matthew has recently been involved with another organisation called Action Duchenne, an online community for patients and parents who suffer with that form of muscular dystrophy. He is also part of a group of mentors from a charity called DMD Pathfinders, which promotes choice and quality of life for sufferers.
He spoke at the Action Duchenne international conference in London earlier this month.
He and five other sufferers of Duchenne muscular dystrophy in their twenties mentored groups of teenagers with the condition.
Mr O’Sulivan said: “It was all young lads there and we were mentoring them about moving out on your own, dealing with the condition and telling them how physiotherapy and hydrotherapy can help them.
“We talked about friendships and relationships because they can struggle with that.”
Spirit of Christmas will take place on Thursday, December 10 at the Christ Church Centre in Reading Road, Henley. Doors open at 7pm and the concert will begin at 7.30pm.
Entry is £8 for the concert or £15 for the concert and reception. For more information, call 07902 878858.