A big sister's love: Five-year-old nurses her little brother through terminal muscle wasting disease

The pictures show a caring sister helping her brother with his coat, giving him a kiss, and tenderly holding his hand as they play together.

But while the scene looks idyllic, it is tinged with sadness, as Joel Wilkinson has a muscle wasting disease meaning he will eventually be left in a wheelchair and his life will be cut short.

The three-year-old, from Hull, was diagnosed with Duchenne Muscular Dystrophy just six months ago after his parents, Emma, 33, and Chris, 36, noticed he was struggling to develop and learn to walk.

They were left devastated when tests confirmed their son had the incurable condition and that is likely only to live to the age of 20.

Now, they have decided to make his short life as full of joy as possible.

   

 

Thankfully Joel's big sister, Phoebe, five, adores her brother and makes sure he is thoroughly looked after - she helps him put on his shoes, fasten up his coat and even helps fetch him his cereals in the morning.

Mrs Wilkinson said: 'We were heart broken when we discovered that Joel had such an awful terminal disease.

'We told Phoebe as soon as Joel was diagnosed that he had a problem with his muscles and that they're weaker than normal.

'It was important she understood so they could play games that wouldn't tire him such as playing with toys and painting.

'We've told them both that the doctors are trying to find a medicine to help.

'She now only plays "muscle friendly" games that don't involve Joel running around and getting extremely tired.

'Phoebe loves her little brother so much and she even takes care of him when they are both at school as they share break times together.

WHAT IS DUCHENNE MUSCULAR DYSTROPHY?

Duchenne muscular dystrophy is an inherited disorder that causes progressive muscle weakness.

It usually only affects boys (around one in 3,500), although girls can carry the defective gene.

Although not apparent at birth symptoms appear in early childhood.

Boys with Duchenne's will have difficulty with walking, jumping and climbing stairs.

The disorder is diagnosed via a blood test and muscle tissue sample.

Sufferers are likely to need increasing help and treatments from the age of nine. 

Walking becomes difficult and a wheelchair is usually needed by the age of 12.

As patients go through their teenage years they are more likely to suffer from complications such as chest infections.

Most people with Duchennes survive well into their 20s and sometimes longer. 

The eventual cause of death is usually a severe chest infection at the stage when lung function is already poor. 

'She openly tells their friends that she won't join in with any games unless Joel can keep up too.

'It's such a relief knowing that she's keeping an eye on him when I'm not around.'

Mr and Mrs Wilkinson found out their son Joel had Duchenne Muscular Dystrophy just before his third birthday last year.

The condition affects around one in 3,500 and causes difficulties with movement, meaning a wheelchair is normally needed by the age of 12.

Mrs Wilkinson said she hopes there will be a scientific breakthrough before that point.

She said: 'His only hope is that researchers have a breakthrough in time to save him and the hundreds of other boys who have this terrible disease.

'Joel will lose the use of his legs first, leaving him wheelchair-bound, and then other muscles thereafter. Eventually, his heart and lungs will fail.

At first Joel's parents thought he was a late developer but when at six months he couldn't sit and by two he couldn't walk they knew something was seriously wrong.

Mrs Wilkinson said: 'Results from the blood test in July said he had muscle dystrophy, but it wasn't until the end of September, after more tests, that we found out it was Duchenne.'

The disease, which results in muscle degeneration, has already left Joel unable to get up the stairs or walk long distances.

Mrs Wilkinson added: 'Joel struggles to stand up and despite only being three he looks like a little old man when he tries to get up.

'It's an awful illness but we are going to ensure that Joel has the best life and with Phoebe's help we know he'll enjoy every second.

'Phoebe will often clear away both of their toys so that her little brother doesn't get too tired.

'She will help him put on his shoes, fasten his coat and even helps him with his cereals in the morning.

'When I tell them both to tidy up their toys Phoebe will instantly stick up for him and say "what about his weak muscles".

 

Mr Wilkinson, who works in IT development support at a logistics company, said: 'We cannot put into words the heartache and devastation Joel's diagnosis is causing us.

'Being unable to help, mend and protect your child is soul-destroying.

'The only thing we can do is bring joy to the time he has.'

Families in a similar position can find support by contacting Muscular Dystrophy UK.

Robert Meadowcroft, chief executive of the charity, said: 'Hearing that your child has a rare muscle-wasting condition can be a huge shock for parents.

'Families time and time again tell us about the importance of having a strong network in place.

'For many parents, family members and charities like Muscular Dystrophy UK, can play a major role in providing that much needed emotional support and practical help, throughout this journey.

'Many families have told us how they are struck by the sense of acceptance and resilience that a sibling can display as their brother or sister gradually gets weaker.

'Siblings can be very protective and supportive of each other, and will often find imaginative ways to play and have fun together despite mobility issues.

'This can be a huge source of comfort and reassurance for parents.'

To donate visit: http://www.joyforjoel.co.uk