Teenagers form strong bond through hospice link (From Oxford Mail)

Teenagers form strong bond through hospice link

10:30am Monday 13th August 2012 in Witney By Fran Bardsley, covering Education, East Oxford and Cowley. Call me on 01865 425439

THESE two teenagers share everything: their passion for football, love of computer games and hopes and fears for the future.

But if it were not for East Oxford children’s respite hospice Helen and Douglas House, Dylan McDermott and Sam Bailey, who both have Duchenne muscular dystrophy, would never have met.

The 15-year-olds, who have been receiving respite care at the hospice for about five years, were first introduced by staff two years ago.

They hit it off and became such firm friends that they now organise their respite breaks so they can go to the hospice at the same time, and meet up for outings in between visits.

Dylan, who lives in Stonesfield and goes to the Marlborough School in Woodstock, said: “It’s good because when you talk, you know they know what you are talking about.”

The pair are both football fans, and watched Euro 2012 on big screens together – but their love of sport does cause friction, with Dylan supporting Manchester United and Sam follows Chelsea.

Sam, a pupil at King Alfred’s Academy in Wantage, said: “We only disagree about football, nothing else really.”

The pair, who both use wheelchairs, have faced some prejudice and discrimination.

On one occasion, they were refused entry onto a bus because the driver thought the wheelchairs were only allowed on the road.

On another occasion when they were out together in Wantage, they heard boys from Sam’s school laughing at them.

Dylan said: “Our legs aren’t working but our brains work.

“Some people talk to my mum and dad, not me, because they don’t think I can talk – even when I say something they still don’t talk to me.”

Sam, who has a younger brother, Andrew, said: “We do talk about the future sometimes and it is quite scary.”

But most of the time the pair are absorbed with normal teenage preoccupations.

The boys’ mothers, Penny Bailey and Lisa McDermott, have also become close.

Mrs Bailey, 46, said; “I have lots of friends and they understand, but they haven’t got a child with the same illness.

“It’s good to speak to someone about hospital appointments, what you think about the future and what troubles the boys.”

Mrs McDermott, 49, added: “They don’t have to explain themselves to each other, they can get on and have fun.

“Before we came to Helen House, I think Dylan felt like he was the only one in the world in the wheelchair. I know they do talk about things they don’t want to speak to us about, and it’s been brilliant for Dylan.”

The families are also hoping to go on holiday together.

• Duchenne muscular dystrophy is a life-shortening neuromuscular condition caused by a lack of a certain protein and almost exclusively affects boys.

   

  About 100 boys are born with the condition – which causes progressive muscle weakness – in the UK each year.

  Research into the condition, for which there is currently no cure, is ongoing but steroids can be used to slow the decline in muscle strength.

  In some but not all cases, boys with Duchenne will also develop learning and behavioural difficulties, which can arise from the effect the condition has on the brain.

  With high standards of medical care, young men with the condition often live into their 30s.

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