Luke and Paul at Ty Hafan Children's Hospice

 “He loves the computers at the hospice, he really does…”

Ty Hafan, the Children's Hospice in Wales, is a very special place.

It is located in its own grounds on the banks of the Channel at Sully, close to Barry to the west of Cardiff.

It was purpose built and opened in January 1999 to provide help and support for the 300+ families, living within Wales, where one or more of the children suffer from a life-limiting illness.

One family who are particularly pleased to have the facilities at Ty Hafan to make use of is the Parkers.  Judy Parker lives alone with her three children in a very  nice district of west Cardiff.  The two boys Paul, 17 and Luke 11 both have Duchenne Muscular Dystrophy, a condition which causes progressive muscle weakness.  Their family are not unusual in having more than one son with this condition, in fact it is more usual than not. 

The Activities Team Leader at Ty Hafan, Sandra Dumitrescu told us, “The personalities of the brothers are very similar and they really light up the place when they come to stay with their smiles, karaoke shows and dressing up!  They both have wonderful imaginations and although they have a debilitating condition they don’t let it get in the way of what they want to do, and the staff are always willing to help them, whether it is accessing the computers or putting on a magic show!”

Three children would be a handful for any family but it is even more difficult for Judy who as a single parent has to cope with both boys by herself.

As Judy explained, in common with many young boys who have Duchenne MD, Luke has become unable to walk, “He is using the wheelchair 24/7, 7 days a week now – it’s full time now.  Despite this, he does go to school and is going up to the secondary in the new term. 

“He’s just like any other boy really.  He likes a lot of music…he likes listening to a lot of music.  He also loves the computers at the hospice, he really does because he can’t use his hands very well, you see, so it does make a lot of difference to him.  He’s getting there, he is, he’s defiantly getting there.   Although I’ve got a computer at home, it’s not connected to the Internet or anything so it’s nice for the boys to be able to use the computers at the hospice.

“Both boys go and stay at the hospice sometimes which gives me some time with my daughter.  It’s really nice for them to be able to go down there, and Luke likes playing his computer games and they watch the TV together – it’s really relaxing for them and me.  Does us all a power of good.”

Sandra added, “The Lifelites equipment is a valuable part of our resources for the children.  For some, it is one of the last things that they can have some form of control over.  When we ask the children what activity is their favourite, 9 times out of 10 they say: ‘The computers’!”

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.