'I'm going to outlive our child, there are no words'

When Amanda and Nick learnt their son had a life-limiting condition, they had no-one in the same situation to turn to.

Jack is only 11 months old but is one of only 16 children in the world with a genetic condition that is so rare it doesn't have a name.

"We are going to outlive our child, and knowing that his brothers and his sister may one day have to say goodbye to him... I can't even begin to explain how difficult that is to process each day," said Amanda.

But the mum said finding a woman in Georgia, USA, whose daughter had the same condition as Jack had been an source of "strength" for them, but added it was "very bittersweet" because unfortunately her daughter did pass away.