Austin Atkinson rides around the garden on his scooter just managing to avoid running over his baby sister Esther.

He is very bright for his two years and has no trouble recognising his England cricketing heroes. Austin loves sport, often preferring to watch cricket to Cbeebies.

But in reality it is highly unlikely Austin will ever play cricket. In fact, he may never walk unaided.

Austin has a rare form of muscular dystrophy which means that he lacks a certain chemical which gives his muscles strength.

Doctors suspected he had Merosin Deficient Congenital Muscular Dystrophy when he was a few months old and was unable to sit up.

But it wasn't confirmed until last summer after a muscle biopsy. The lack of merosin in his muscles means that he cannot retain creatine kinase which gives muscles their strength.

He is one of only a handful of children with the condition in the north of England. It is an inherited condition which needed both his dad Richard and his mum Gill to carry the gene.There is no treatment or cure for MD, only regular physiotherapy to stop his muscles wasting away.

"Because there are so many types of muscular dystrophy, it is very hard for the doctors to tell us what will happen to Austin," explains Richard.

"Every case is different. Some will be wheelchair-bound and others will be able to walk. We just have to do our best for Austin."

Unlike some other MD conditions, such as Duchenne which is progressive, the lack of, or reduced level of, merosin is a stable condition, but he may struggle more as his body grows because it will be harder to cope with the extra weight. The scooter has been a blessing, giving the two-year-old freedom and independence of movement for the first time. And it goes with him everywhere – even to Soccer Tots – as his parents try to give him as normal a life as possible.

Austin also has a specially adapted exercise bike which he is very proud of, again designed to build up the strength in his muscles.

A physiotherapist visits the family's Wakefield home every two weeks and Gill and Richard work with Austin every day, but it is sometimes hard for a two-year-old to understand why it is so important to try to walk.

His determination and the determination of his parents has meant that Austin can stand unaided and his parents' aim is for him to one day be able to walk by himself.

"He worries that he might fall off his bike if he gets knocked as he can't put his hands out quickly enough to save himself," says Gill.

"It is very hard. There is always this sad feeling that there is nothing we can do to help him."

After a period of grieving following Austin's diagnosis, Gill and Richard have decided to launch a fund-raising campaign to help fund research into a cure and treatment for MD. They have organised a fund-raising concert on Sunday which is sold out and they hope it will become an annual event.

The funds raised, in excess of £2,000, will go to the Muscular Dystrophy Campaign which fund research and also support for people with MD.

The Hold My Hand Concert got its name after Gill took Austin to the park one day.

"I often watched mums with toddlers holding hands and I realised I never held hands with Austin because he was always in a pushchair. Then one day we went to Chester Zoo and Austin just said 'hold my hand mummy', and it meant so much."

There is no doubt Austin will have a lot of hurdles to overcome, but with his bright, enquiring mind and the love and determination of his parents, he has the best possible chance.


Facts about MD


Muscular dystrophy is a genetic condition where slow, progressive, muscle wasting leads to increasing weakness and disability.

There are more than 20 types of genetic muscular disorders, and even more acquired, each differing in their symptoms and severity.

Most types of muscular dystrophy are very rare, with about 1 in 20,000 babies being born with the condition in the UK each year.

There are about 60,000 sufferers inthe UK.

Most forms of muscular dystrophy are caused by mutations (cellular changes) in the genes that are responsible for the structure and functioning of a persons muscles. The mutations bring about changes
to the muscle fibres and interfere with their ability to shorten. As muscle contraction plays an essential part in the functioning of muscles, muscular dystrophy often results in severe disability.

Symptoms differ from person to person but generally, muscular
dystrophy causes the following symptoms: difficulty walking; clumsiness; frequent falls; difficulty standing, and breathing problems.

There is no cure for muscular dystrophy. But recent genetic research has found that, in the future, it may be possible to reverse the effects of myotonic dystrophy.

Visit www.muscular-dystrophy.org for more information.