LITTLE Darcie is the picture of health. Smiley, bright-eyed, cheeky and incredibly active, at first glance she is like any other child.

Look again and you realise something isn’t quite right. For round her neck are cotton strips, like a mini bandage, holding a tube into her throat – a tracheotomy - in place.

Three-year-old Darcie has vocal cord paralysis. Her vocal cords are paralysed in a half open position, pushing into a narrowing her airway. The muscle around her airway is also floppy so having a tracheotomy – a tube through her neck into her throat - is the only way to keep her safe. Without the trachea Darcie starts to panic as she fights for breath. "And the panicking just makes things worse until she is fighting for every breath," said mum Lydia Willoughby.

From the moment she was born, it was clear something was wrong.

"Darcie kept turning blue and needing oxygen. With every breath she made a high pitch squeaking noise, like a guinea-pig. It was the sound of the air squeezing out of the tight airway."

Doctors made the decision to transfer Darcie from Poole Hospital to Southampton General Hospital for tests.

Lydia explained: “It was rush hour, and we had to make our own way there as the ambulance was full with a doctor and nurse - plus, they said they did not want us to travel with them in case something happened. It was terrifying.

“She had cameras down her throat, wires all over her body, and 15 litres of oxygen minute being pumped into her to keep her airway open. I tried so hard to be strong for her sake, but it was awful. Just seeing a doctor would set me off crying."

Little did Lydia, 25, and Ben, 27, know that same heartache would be repeated with the birth of their second child Hunter, now nearly two.

“We were devastated,” said Lydia.

“Straight away it was obvious that he had the same condition as his sister. It was a huge blow to me and Ben because we had thought, had hoped that Darcie’s condition was just a fluke, just one of those things. I was a complete mess, just couldn’t stop crying."

Having two children who cannot breathe independently has not been easy but Lydia and Ben have been supported by staff at Julia's House Children's Hospice, which provides respite and services for any family living with life-limiting or life-threatening conditions.

Lydia said: "I was terrified about how I was going to cope with two poorly children to look after; I just thought my life would be hell. Me and Ben were so stressed.

“Thankfully the Julia’s House nurses and carers are so calm in a crisis. I can panic when things go wrong. Having them around makes me feel more relaxed. I know I can walk out of the house and not worry – I could not do that with anyone else.

"We'd be lost without them."

Hunter and Darcie have weekly Julia’s House care sessions at home and once a month Lydia takes them to the Dorset hospice in Corfe Mullen.

“The children get so excited; they literally jump up and down when they know the Julia’s House team are coming. They do baking, bubbles or play outside.

“They have their care sessions at the same time so that I can get a complete break, explained Lydia.

"It is exhausting having two poorly children to look after all the time.”

The daily care routine involves cleaning round the trachea tube and changing the ties that hold it in place. It’s important to keep the tube clear – if it gets blocked or needs changing it becomes an emergency situation.

And the care doesn’t stop at night: “They go to bed at 7pm and I go to bed at 8pm, but that’s because I am up for an hour every four hours to put the children on a nebuliser, a mask that they wear over their tracheas for 20 minutes to help keep their airways clear of secretions. I can’t ever have a night off.

“We get stares and attention when we are out with the children but we try and ignore it.

“We were at a soft play centre and some parents pulled their children away and said: ‘Don’t play with them.’ I felt like shouting at them: ‘You can’t catch a trachea!’

“That’s the best thing about Julia’s House - the people there are totally non-judgmental. They are caring, reassuring and supportive. They make you feel great about yourself and proud of how you are coping. And that yes, actually, you’re good parents doing a really good job.”

For more information about Julia's House go to