Going the extra miles for Dylan

Buy photos » Dylan's parents are taking part in a swimming challenge to raise money for adaptations to their home. Pictures by Nick Hands 0412047NHR2. Order these pictures at www.buyphotos247.com.

THE PARENTS of an Oakenshaw boy are taking the plunge to raise £15,000 for adaptations to their home.

Dylan Tillsley, who turns five this week, was diagnosed with spastic diplegic cerebral palsy aged 18 months, meaning his legs often get tired, he struggles to climb stairs and he suffers from painful cramps at night.

His parents Marc and Emma are hoping to turn their garage into a bedroom and wet room so he will have more independence.

Money will also go to a specialist adjustable bed which will be able to move him in to positions which will help the intense cramps.

Policeman Marc, who is a confident swimmer, will be swimming the length of lake Llyn Padarn in Llanberis, a distance of around two miles, and a further mile in Llyn Idwal, Snowdon, during the first weekend of August. Emma, who works at the Halfords head office, has also agreed to join in despite having a fear of open, deep water.

She will be swimming a solo length of Llyn Idwal and has already started training to conquer her fears.

"I am frightened of deep open water and the thought of getting my face in any water is daunting so I am having lessons to try and grasp the basics. I am terrifed but there are a lot of people behind us willing us on." she said.

"There is nothing like to trying to help your own children to spur you along and I just need to make sure I do it for him.

"We are hoping to complete the challenge on the weekend of August 4 and 5 but it depends on the weather and water quality.

“We chose to have children and it was not exactly how we planned it but we chose to deal with it. It is a bit of a big thing for us to admit we cannot do it without other people’s help. The difference for him and for us will be huge."

The family had originally looked at other ways of funding the equipment but were told, if even they were approved, it could take years before the changes were made.

Currently, Dylan crawls up the stairs to get to bed or use the bathroom but his condition means sometimes even this is too difficult for him. By making the adaptations to their garage, the family hope this will mean he can move around more easily and will also help them when he becomes too big to be carried up and down the stairs.

An adjustable bed will also mean they will not have to physically lift and move him during the night to alleviate the cramps, which are caused by the tightness in his legs. The pain, which has been helped slightly by medication which relaxes the muscles, means he is often unable to move more than a couple of inches.

Emma added: “We are hoping to get a bit of independence for him, he knows what he should be able to do and know what he cannot do.

“He does not want to be lifted and carried so it's about having a space that's safe for him.

“Because he does not complain, you do not realise how much he has to do that children his own ages do naturally. Even hopping or jumping are things he cannot do.

"He has enough challenges to deal with but I want him to have as normal a childhood as possible."

The family first noticed something was wrong when Dylan was around five months, as in all of their photos of him his head was resting on his right shoulder - the side which is most affected by the condition. It took months to get a diagnosis after initially been told he was just a slow developer.

"He did not start talking til he was nearly three and he was also late to start walking but he is very determined, brilliant and is always smiling even when he's in pain.

"The problem with cerebral palsy is nobody can tell what the future holds, it affects every child differently.

"You have to be prepared for everything really as some days he can do really well and some days he is falling over almost before he has got out of bed.

"But he has got a smile for everyone he meets, even when the doctors are taking blood from him and hurting him, he is looking up at them smiling."

Visit www.swim4dylan.webs.com or follow @Swim4Dylan on Twitter to keep up to date with the fund-raising.