Dan and Sam are 16-year-old identical twins and their brother Tom is 13. When the twins were five years old they were diagnosed with Duchenne Muscular Dystrophy, a genetic disorder which affects boys. They were born apparently healthy but the condition began to show itself between the ages of three and five years as their muscles gradually weakened as they grew.

Sam was the first child to display symptoms as a toddler but they were dismissed as being delayed development linked to the twins' premature birth. Two years later, Dan still couldn't jump or hop and doctors eventually diagnosed Duchenne MD. Sam was diagnosed quickly afterwards.

For Helen and Chris, it was devastating news and they found it hard to contemplate the fact that Tom could also be affected. He was just two and a half and, when his tests came back positive, Helen insisted they repeat them because she wouldn't believe it. To have all three of her boys diagnosed with a debilitating, life threatening condition was just too much to take in.

As time goes on, Tom's condition has developed more quickly than that of his
brothers. "He literally fell over one day and never got back up," said Helen. "One
moment he was walking and the next he wasn't and we found that really hard to deal with. For Dan and Sam it was a bit more gradual."

The family began visiting Claire House 10 years ago within months of the diagnosis, at first for regular physiotherapy sessions which they still receive once a fortnight. Within a year, the boys were confident enough to stay for a few nights at a time without their parents which gave Chris and Helen the chance to have a break and recharge their batteries.

"I haven't slept well from the moment we were given the diagnosis, it just seems to pray on my mind more at night. I find it hard to switch off," said Helen.

Both parents are full-time carers to their sons which is a demanding, 24 hour a day
job. The routine begins early in the morning to make sure all three boys are up and ready for school in time. Dan and Sam have some independent movement but Tom needs help with everything, from getting dressed to using the toilet. It is physically and emotionally draining for Chris and Helen who also get up in the night to attend to Tom's needs.

Visits to Claire House are a light at the end of the tunnel and a chance for Helen and Chris to rest and spend time together. Once a year they are even able to visit friends in Spain in the knowledge that their children are safe and happy at the hospice. "I leave my worries at Liverpool Airport and pick them up when I come back," said Helen. "It makes such a difference - without Claire House we really wouldn't be able to cope."

The Lloyd boys are bright (this year Dan and Sam passed 19 GCSEs between them) and have a great sense of humour. They want to do the things that other boys their age do, like going out with family and friends, but outings have become something of a military operation with three growing boys and three wheelchairs. "There are some places that we just can't go to and most of the time we have to ring ahead to explain," said Helen. "At Claire House, nothing is a problem because everything they need is there and they can be so much more independent."

The staff at Claire House are on hand 24 hours a day for the families who visit. "Just to know that someone is there on the end of the phone if we need them is such a God send," said Helen. "My worst nightmare is all three boys going down with a stomach bug at the same time because we would have to admit defeat! But I know that Claire House would step in to help us and that puts my mind at rest."

With a condition like Duchenne Muscular Dystrophy the goal posts change all the
time but for the Lloyd family the experience is three times as challenging. The
support they continue to receive at Claire House enables them to ride the storms and enjoy the good times and, when the time comes, the hospice will be there to deliver the best possible end of life care.