Nancy is mother and carer to Daniel - but she has problems of her own.

A genetic condition, retinias pigmentousa, has left her blind.

Jack and Nancy Blaik look after disabled Daniel

However, together Jack, 55, and Nancy, 67, manage to look after Daniel who has metabolic leighs and encephalopathy.

The rare and degenerative condition has made him profoundly disabled, mentally and physically.

For Jack and Nancy not a night goes by when they do not need to care for Daniel.

They receive small respite when he attends a specialist centre during the day.

They also have a paid carer who comes in two to three hours a day.

Their son needs total, constant care.

And the pressure of looking after Daniel has left its mark.

The Blaiks both have bad backs from lifting and Nancy has arm spasms occasionally.

The burden of care is not just in their own home as Jack also looks after his mother two hours a day.

Heart condition

So, it was of no surprise when Jack was diagnosed with a heart condition in 1997 which doctors believe may have been stress related.

Jack and Nancy's main frustrations are not being able to sleep.

They try to do normal things, such as going to church, but it takes so much effort.

Respite care is given one night a week and occasionally they call in an extra paid carer, however, outside help is stressful for Daniel.

Despite the hard work, the stress and the constant feeling of tiredness, Nancy and Jack adore Daniel.