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Friday, 25 April 2014

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Dawn says: Give us a break!

DURING her darkest hour Dawn Raynor had thought about ending it all. As the mother of two severely disabled teenagers, she is constantly exhausted, stressed and at times very depressed.

She felt no longer able to battle through life.

Although she sometimes displays the physical scars which come from having to restrain her son, the emotional and mental stress remains largely unseen to the outside world. You rarely see her without a smile. Together with her husband Peter, she has an inner strength that keeps her going. Every day the couple wash, dress, feed, medicate and care for their 14-year-old sons.

They simply “get on with it” – just like so many other families with disabled children. And along with this tough everyday life, they have to battle the system, as well as the perceptions of society.

Callan and Ethan are big and strong but their mental age is about six or seven. They have tuberous sclerosis which means they have uncontrolled epilepsy, suffering up to 20 seizures a day. These fits can happen anytime and anywhere – in bed, in the house, at school, in the street, in a shop.

The saddest part for Dawn and Peter, of Moor Row, is that they never know if their boys’ next fit could be their last.

“You can’t turn your back for a second, the only time I know they are safe is when they are in bed. When you see them taking a really bad seizure I worry that this one could be their last,” Dawn told The Whitehaven News.

Callan and Ethan are very loving and affectionate and the family do have some great laughs. But they can also be aggressive and unpredictable.

“One time Callan was trashing his bedroom and he virtually kicked me over his TV, he was totally out of control and screaming,” said Dawn, a hairdresser. “I got onto the bed and had hold of his arms. I let go of one arm and he got hold of me and scratched down my neck then went mad through the house.

“I had to put the cold shower on him and take his legs away, easing him to the floor and then sat on top of him. There is no worse point in your life when this is happening than having my other two sons looking on, watching it all.”

Callan was 12 at the time and Dawn managed to eventually calm him down. She went on: “He then sat on the worktop in the kitchen and said ‘I am sorry mam but I really need help with my rage’.

“It’s heartbreaking when your child tells you he needs help. As a parent you just want to take it all away and make it better.”

They could possibly stop the boys’ seizures by giving them an even bigger cocktail of drugs than what they currently take but they would be so highly medicated that they would not be able to move.

“If they do not have the drugs they are on, they would die because the seizures would take over,” said Dawn.

On another occasion Callan has sat in the middle of King Street and had to be restrained by Dawn while people looked on. And once he had a fit in a shop and people just stepped over him.

“He has had a fit in a shop and often no-one comes over. He can also be incontinent but they don’t allow him to use the toilet,” said Dawn. “Society has changed and I think it is fear. People aren’t sure whether they should come over, they might think they are interfering, but it would be nice to be asked if we need any help.”

The twins were just two months old when Dawn and Peter, who works at Sellafield, realised that something wasn’t quite right. “Ethan started to have a partial seizure down one side and would twitch,” said Dawn. After a CT scan, doctors confirmed tuberous sclerosis and later Callan was also found to have the same condition.

“It was like a bereavement in the family – suddenly our sons had massive needs and we didn’t know what to do. It wasn’t easy for us to accept.”

The couple’s other son Kaine, who will be 17 next month, was two-and-a-half at the time so they already had their hands full. Over the years they have also worried about Kaine missing out on their attention. He has been an absolute star of the family, they say. “Kaine is absolutely brilliant but he has missed out on a lot,” said Dawn.

“Peter and I have been depressed, stressed, anxious and had many arguments over the years, it isn’t easy,” said Dawn. “But we couldn’t have done it without each other and our family.”

When Callan was about nine years old he had split brain surgery at London’s Great Ormond Street Hospital where he stayed for two weeks. This was to prevent him from dropping to the ground whenever he has a fit. “I have never seen so much bravery in my life, we would sit there in awe,” said Dawn.

Every stage has been a battle from getting the twins into schools to accessing what they require to help day to day living. “Everything is hard work – you have to look for everything and get all the information yourself, which is wrong because life is hard enough. It’s not the people, it’s the system,” says Dawn.

The couple get direct payments which they spend on extra care for the twins, mainly through their nephew, who offers them a very able third pair of hands.

“I’d love to take the boys for a walk up a mountain or to the shops but we just can’t. I would love to let them go out and play where they could be safe.”

Dawn and a small group have set up the Give Us A Break group to build a respite centre in Copeland. A service does exist at Workington but Dawn says The Elms is only open three days a week and was only ever supposed to be a stepping stone following the closure of Seacroft, at St Bees.

“Our vision is to have a six to eight-bedroom centre with a massive soft play area, sensory room, hydro pool, a big garden and a log cabin so the kids can camp outside. I want kids to be able to go out and have some fun and run around in a safe environment. I know in my heart this is going to happen because we have so many people behind us now.”

She added: “None of this is about me. I just know how hard it’s been for us as a family and there are so many similar kids and families out there who need time to recharge.”

DAWN and Peter are not alone in their struggle. Give Us A Break is a group set up by Dawn and some other parents who recognised the need for more respite for families in West Cumbria.

They want somewhere children with disabilities can go and let their hair down and enjoy themselves – to do what most other youngsters are able to do every day. And it would give their families a much-needed break, time to recharge, ready to cope with the stresses of life.

The group is seeking charity status and putting together a business plan with the expert help of Energy Solutions, of Westlakes Science Park. So far £20,000 has been raised towards an ambitious £1million total to provide a respite centre in Copeland.

More people are offering their help but much more is needed – both to help with the group and also with fundraising.

The Whitehaven News will be running articles over the coming weeks and months to feature other families in a similar position and the issues they face as well as fundraising activities. If you would like to tell your story, cal us on 01946 595136 or email news.wn@ whitehaven-news.co.uk

To pledge funds email Dawn at dawnraynor@btinternet.com or via the group on 07776 422980. Email giveusabreak@hotmail.co.uk. To donate online visit: http://bit.ly/SgxTM1

To raise funds email Dawn at dawnraynor@btinternet.com or via the group on 07776 422980/ email giveusabreak@hotmail.co.uk

The Paypal link to donate is: http://bit.ly/SgxTM1

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