Dhruvin Shah and his family at Shooting Star House

Dhruvin and Jaimick Shah are just like any other brothers. They play together and argue and then are fiercely defensive of each other in company.  But there is one important difference.  The older of the two brothers, Dhruvin, has Duchenne Muscular Dystrophy which is a very serious condition only affecting about one in every 3,500 male births in the UK.   It causes progressive muscle weakness, which means, at the age of 11, he now has to use a wheelchair to get about.  Although he may not be able to run and jump like other children, he is still interested in the things others of his age would be – and that includes computers and television programmes.

The Shah family regularly attends Shooting Star House Children’s Hospice in Hampton, London, where they receive support for them all and help with care for Dhruvin.  Whilst at the hospice, they find they get plenty of enjoyment from the facilities provided by Lifelites.

Mrs Shah, the boys’ mother, takes up the story: “Before The Shooting Star Children’s Hospice was here, we never went anywhere.  Now we’ve been coming here regularly for the last two years and it’s very nice.

"Both the boys and ourselves [father and mother] make a lot of use of the Lifelites equipment.  The boys love it.  They go straight to The Sparkle Play Room where the computers are kept and start to search the Internet and email their friends.    They have a computer at home but they tend to play games more on that.  On the Lifelites’ computers, both of them more often use the Internet and do their homework.

"Dhruvin is moving up to a new mainstream school in September.  He was very sad to leave his old school as they were so supportive, but now he’s getting excited about the move to the high school.   He keeps saying, ‘Mum, buy me the uniform’ and he’s typed a copy of the uniform list out from the school’s website on the computer at Shooting Star House.

"The boys also enjoy watching films on the big television screen provided by Lifelites.  It’s a very good way to keep them entertained whilst we are visiting and they are occupied whilst we talk to the care staff.  It’s a really good arrangement for us all and helps us a lot.”

About Duchenne Muscular Dystrophy

From www.muscular-dystrophy.org
What is Duchenne Muscular dystrophy?

It is one of more than 20 types of muscular dystrophy. All the muscular dystrophies are caused by faults in genes (the units of inheritance that parents pass on to their children) and they cause progressive muscle weakness because muscle cells break down and are gradually lost. The Duchenne type affects only boys (with extremely rare exceptions) and a problem in this gene is known to result in a defect in a single important protein in muscle fibres called dystrophin. It is named after Dr Duchenne de Boulogne who worked in Paris in the mid-19th century who was one of the first people to study the muscular dystrophies.

How serious is it?

This is a very serious condition. Most affected boys develop the first signs of difficulty in walking between the ages of one and three. They are usually unable to run or jump like their peers, often struggle to climb stairs and need to use a banister for support. Rising from the floor can also prove difficult.

As the condition progresses, boys with Duchenne muscular dystrophy are unable to walk as far or as fast as other children and may occasionally fall down. Some boys also have learning and/or behavioural difficulties that may begin to manifest at this stage.

Between the ages of eight and 11 (rarely earlier or a little later) boys become unable to walk and by their late teens or twenties the condition is severe enough to shorten life expectancy.

However, many forms of management are now available that have changed the outlook and which it is believed in most cases can help with the complications of the condition.

How common is it?

About 100 boys with Duchenne muscular dystrophy are born in the UK each year. There are about 1,500 known boys with the disorder living in the UK at any one time. For the general population the risk of having an affected child is about one in every 3,500 male births.