“No parent should ever have to think about resuscitation plans for their child.”

For Emma and Phil, this is a harsh reality. Their son, 10-year-old Joshua, relies on a ventilator to ensure he breathes during the night.

Joshua was born unexpectedly at 26 weeks and spent the first four months of his life in hospital. “There were lots of issues with is inability to remember to breathe,” said Emma. “Doctors thought it was because he was premature.

“Three days after coming home, he went into respiratory arrest. We had to resuscitate him at home and it was terrifying. He went back to hospital and it was really hard. We also have a 13-year-old daughter, Erin, and we desperately wanted our family to be together. Our first Christmas together, Joshua was in neonatal intensive care unit with little stockings hung on the end of incubators.

“It was presumed he had a respiratory virus but when we went home, he stopped breathing again. And that was our picture for the next eight months. No one really knew what was causing it.”

A sleep study revealed that when Joshua was asleep, he forgets to breathe. He now has non-invasive ventilation, which means he has a ventilator at night. He is a lot smaller in size than other 10-year-old children and he gets very tired. He also has learning disabilities and has numerous medical problems.

“Since he has been ventilated at night, and sometimes at school if he needs it, we have not had to go in hospital,” Emma said. “He does have to have his ventilator with him at all times. When you look at Joshua, people don’t grasp that he is as disabled as he is. He just looks like a smaller child.

“We have been told Joshua has a neuromuscular gene change, which doesn’t come from either parent. We know it is going to cause an issue but because it is so rare, we don’t know what will happen.

“It is so worrying and it is always hanging over us. We don’t know if he will have a short life span or a normal life. I am a planner and I have to accept that there is nothing I can do. It really is incredibly isolating.”

Joshua was referred to Rainbows in 2021 by the ventilation team at the hospital. “It is a very special place,” said Emma. “There are two places I can relax properly, one is Rainbows and the other is the ICU. We know he is always looked after and he is never left on his own.

“Rainbows is so important to us and it is so nice to see Joshua grow at Rainbows. When we first went to the hospice, he wouldn’t leave our sides but now he likes to go off on his own. He is more independent and this is what we want for him.

“Rainbows has also given support to Erin and given her a safe space. She always wants to go to Rainbows. I think it gives her a place where she can be herself.

“If you ask how I am coping day to day, the honest answer is I don’t. A couple of years ago, I really broke down because I didn’t process it. It took me six months, with counselling, to get me back to a place where I could manage.

“We are swimming in a situation we have no choice over. We are not going to pretend it is easy, we are not going to pretend we haven’t cried a lot. Rainbows gives us a place to show all of your emotions and grieve for a life we should have had and a life Joshua should have had. We can still live, we don’t let it stop us from doing things.”

Rainbows gives us a place to show all of your emotions and grieve for a life we should have had and a life Joshua should have had.