‘We were in shock, but now we just get on and deal with it’

From left, Jay Adams 7, Callum Adams 10, Leon Adams-Sellen 4, Nigel Adams 54, Trish Adams 51, Anna Adams 32, Shane Adams 33
From left, Jay Adams 7, Callum Adams 10, Leon Adams-Sellen 4, Nigel Adams 54, Trish Adams 51, Anna Adams 32, Shane Adams 33
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For Nigel and Trish Adams, family is the centre of everything. They agreed early on in their courtship that they wanted lots of children and, with seven boys and girls and nine grandchildren, they have certainly achieved it.

Their bungalow in Gosport is usually filled with relatives, lots of laughter and joy.

But over the years there has been sadness too. Two of their sons and two of their grandsons have the severe muscle-wasting condition Duchenne muscular dystrophy (MD).

Their eldest son Shane’s condition was picked up at nursery where staff noticed that he found it difficult to balance.

At home Trish, 51, and Nigel, 54, realised he waddled, but put it down to him being big for his age.

But a blood test revealed, just days before their wedding in November 1985, that Shane had Duchenne, a severe muscle-wasting condition affecting boys, which leads to disability.

People with the condition will usually need to use a wheelchair by the time they reach 12 and for many it’s much earlier than that.

But the most painful piece of information Nigel and Trish were given that day was that their beautiful, bright boy would probably be dead by 22.

Nigel, a former Royal Navy sailor, says: ‘That day will never leave me.

‘We were due to get married five days later. We’d never heard of it before. He gave us a book about muscular dystrophy and explained the prognosis – that Shane wouldn’t live past 21.

‘We were in shock.’

The couple decided to go ahead with their wedding with Shane as pageboy and daughter Anna, now 32, a bridesmaid. But everything changed for them.

Because they knew Shane’s health would deteriorate they moved from their tiny pre-war house to the bungalow in St Vincent’s Road, Gosport, where they still live.

It was fully adapted to cope with Shane’s impending needs.

They went on to have five more children after Anna, four girls and their youngest son, Callum, now 10.

Duchenne is caused by a genetic mutation which, in the Adams’ case, runs through the female line. Every time Trish fell pregnant it was a gamble. But one they were willing to take.

Their much-longed for seventh child also has the condition and is now beginning to struggle. Trish explains: ‘I had a test which showed the baby was a boy.

‘The doctors told me there was a one-in-three chance he could have MD.

‘At that point we were asked to decide if we wanted to carry on with the pregnancy. But by then I had felt him move and I’d already made up my mind.

‘I was going to have my baby, even though I knew it would be difficult.’

By then Shane was already in his 20s – the age doctors predicted he would die.

But, now 33, he has defied medics by being very much alive and at the heart of family life.

Shane is in a wheelchair and needs 24-hour care from his parents. But he adores his younger siblings and nine nephews and nieces who fill the house with joy and laughter.

Over the years he has had a number of operations and attempts at helping him to walk – all of which have failed.

He says: ‘I got to the point where I’d just had enough.

‘Nothing they did worked. I decided that I didn’t want any more treatment. At times it has been frustrating but I’m coping well with it now.’

Callum is now at the stage where he too is becoming frustrated. He wears splints to help him walk and he is on muscle-relaxant medication.

Trish and Nigel have taken the decision with both their sons not to allow them steroids. They fear the negatives outweigh the positives.

Sadly, that is now something daughter Anna has to think about too. Two of her six children also have Duchenne, Jay-Lee, seven, and four-year-old Leon-Harvey.

Jay-Lee has a milder form but Leon-Harvey already needs a wheelchair. Fighting back tears, Anna says: ‘We just get on and deal with it.

‘Leon uses his wheelchair a lot more than I thought he would.

‘Jay is not the type to take it easy. He absolutely loves running around with his mates. You cannot really tell that he has Duchenne.’

One thing they can always count on is family and friends.

They are a big, close-knit family with lots of friends in the area, including Mick Drage who they say has been a rock.

Nigel and Trish celebrated their 30th wedding anniversary in November and it was proud day for them, even though it marked, almost to the day, when they discovered how ill their first-born was going to get.

But he has defied doctors’ predictions and they are rightly proud of him.

Nigel says: ‘All our close friends when we told them about MD and the life expectancy, felt we were gearing ourselves up for the inevitable.

‘As each year’s gone by Shane is still with us and our motto is, if he’s still smiling, what have we got to cry about? So we soldier on.’

To see a video of the family, go to portsmouth.co.uk.

‘What have we got to cry about?’

For Nigel and Trish Adams, family is the centre of everything.

They agreed early on in their courtship that they wanted lots of children and, with seven boys and girls and nine grandchildren they have certainly achieved it. Their bungalow in Gosport is usually filled with relatives, lots of laughter and joy.

But over the years there has been sadness too. Two of their sons and two of their grandsons have the severe muscle-wasting condition, Duchenne muscular dystrophy (MD).

Their eldest son Shane’s condition was picked up at nursery where staff noticed that he found it difficult to balance.

At home Trish, 51, and Nigel, 54, realised he waddled, but put it down to him being big for his age.

But a blood test revealed, just days before their wedding in November 1985, that Shane had Duchenne, a severe muscle-wasting condition affecting boys which leads to disability.

People with the condition will usually need to use a wheelchair by the time they reach 12 and for many it’s much earlier than that.

But the most painful piece of information Nigel and Trish were given that day was that their beautiful, bright boy would probably be dead by 22.

Nigel, a former Royal Navy sailor, says: ‘That day will never leave me.

‘We were due to get married five days later. We’d never heard of it before. He gave us a book about muscular dystrophy and explained the prognosis – that Shane wouldn’t live past 21.

‘We were in shock.’

The couple decided to go ahead with their wedding with Shane as pageboy and daughter Anna, now 32, a bridesmaid. But everything changed for them.

Because they knew Shane’s health would deteriorate they moved from their tiny pre-war house to the bungalow in St Vincent’s Road, Gosport, where they still live.

It was fully adapted to cope with Shane’s impending needs.

They went on to have five more children after Anna, four girls and their youngest son, Callum, now 10.

Duchenne is caused by a genetic mutation which, in the Adams’ case, runs through the female line. Every time Trish fell pregnant it was a gamble. But one they were willing to take.

Their much-longed for seventh child also has the condition and is now beginning to struggle. Trish explains: ‘I had a test which showed the baby was a boy.

‘The doctors told me there was a one in three chance he could have MD.

‘At that point we were asked to decide if we wanted to carry on with the pregnancy. But by then I had felt him move and I’d already made up my mind.

‘I was going to have my baby, even though I knew it would be difficult.’

By then Shane was already in his 20s – the age doctors predicted he would die.

But, now 33, he has defied medics by being very much alive and at the heart of family life.

Shane is in a wheelchair and needs 24 hour care from his parents. But he adores his younger siblings and nine nephews and nieces who fill the house with joy and laughter.

Over the years he has had a number of operations and attempts at helping him to walk – all of which have failed.

He says: ‘I got to the point where I’d just had enough.

‘Nothing they did worked. I decided that I didn’t want any more treatment. At times it has been frustrating but I’m coping well with it now.’

Callum is now at the stage where he too is becoming frustrated. He wears splints to help him walk and he is on muscle-relaxant medication.

Trish and Nigel have taken the decision with both their sons not to allow them steroids. They fear the negatives outweigh the positives.

Sadly, that is now something daughter Anna has to think about too. Two of her six children also have Duchenne, Jay-Lee, seven, and four-year-old Leon-Harvey.

Jay-Lee has a milder form but Leon-Harvey already needs a wheelchair. Fighting back tears Anna says: ‘We just get on and deal with it.

‘Leon uses his wheelchair a lot more than I thought he would.

‘Jay is not the type to take it easy. He absolutely loves running around with his mates. You cannot really tell that he has Duchenne.’

One thing they can always count on is family and friends.

They are a big, close-knit family with lots of friends in the area, including Mick Drage who they say has been a rock.

Nigel and Trish celebrated their 30th wedding anniversary in November and it was proud day for them, even though it marked, almost to the day, when they discovered how ill their first-born was going to get.

But he has defied doctors’ predictions and they are rightly proud of him.

Nigel says: ‘All our close friends when we told them about MD and the life expectancy, we were gearing ourselves up for the inevitable.

As each year’s gone by Shane is still with us and our motto is, if he’s still smiling, what have we got to cry about? So we soldier on.’

• To see a video of the family go to portsmouth.co.uk.

Over the years Nigel has carried out many fundraising events for Muscular Dystrophy UK.

From sponsored walks and runs to dartathons, Nigel has raised thousands of pounds, inspired by eldest son Shane.

After taking a hiatus to concentrate on his family, Nigel is again fundraising.

And this time splitting the profits between Muscular Dystrophy UK, Southampton General Hospital Muscle Research Clinic and the Gosport Sea Cadet unit, TS Hornet.

The event is a Rod Stewart and Tina Turner tribute night at the Gosport RNA Club, Fareham Road, on March 26.

Tickets are £5 and can be bought directly from Nigel or from the RNA club from March 1.

The family are also very keen to hear from other families who are going through similar experiences to them.

There was a support group for the Gosport area but that disbanded some years ago.

Nigel says: ‘We know there are other families going through what we are going through.

‘And it helps to talk to other people about your experiences.

‘There must be people out there who will read this and see there is another family like their’s who have been there, done it and got the T shirt.

‘Or perhaps a family whose child has only just been diagnosed and they would like some advice from us.’

To contact Nigel email hedcaent2014@gmail.com.

For more information go to musculardystrophyuk.org