She is only 14 years old but has already told her mum what music she wants played at her funeral.
It is a conversation no parent should ever have with their child, but this is the tragic reality for Paige and Gail Glover.
Paige, from Donaghadee in Co Down, was born with a condition where the two main blood vessels leaving the heart are swapped over — meaning blood does not flow properly around the body.
At just five days old she went through surgery to correct the problem and amazed doctors with her recovery.
Gail (42) explained: “Because her condition was so rare they didn’t know what the future was long-term, but she went back every year for a check-up and they kept saying it was brilliant, they couldn’t believe how well she was doing.
“Then in August 2010 she started having problems with her breathing.
“I remember my husband Davy bringing her back from her dance class and saying she couldn’t go again until we saw the doctor.
“I thought there was probably something wrong with her heart; she would have another operation and everything would be fine.
“She was taken to theatre for the doctor to have a look at her and find out what was going on. She was supposed to be in surgery for an hour, but it was five hours before the doctor came out.
“He came over and said: ‘I’m sorry, there is nothing we can do’. Davy was devastated, he just stood with his head in his hands and I just couldn’t take it in.”
With a diagnosis of pulmonary hypertension, her lungs and heart were now affected.
She was transferred to Great Ormond Street where she underwent further surgery and now relies on a complex medical regime just to stay alive.
Some of her medicine is administered directly into Paige’s chest through a heart pump while she receives the remainder through a nasal feeding tube.
“She hates the feeding tube; she has had so many things done to her she is really frightened of it and she had to be sedated the last time before they could put it in,” said Gail.
“She has to be tube-fed because her weight was getting really bad. She gets sick quite often and can’t tolerate the feed.
“We have a camera in her bedroom so I can see her when I am in the kitchen. I sleep with her at night. She could have a heart attack at any time and I can’t bear the thought of going into her in the morning and her being gone.
“Last year she ended up in intensive care. I thought I was going to lose her. The slightest wee infection could finish her off,” Gail explained.
“Paige is so brave. She used to ask questions about what was going to happen to her. She asked our family priest to put in a good word for her upstairs. She has even picked the song she wants played at her funeral.”
Gail continued: “The hospice is brilliant. I always thought I could cope myself but they are there whenever we need them.
“We do have great family support and they will sit with Paige if Davy and I go out, but we never want to go too far.
“Paige is waiting for a double lung transplant as well, so we always want to be close to home in case we get the call.
“Life revolves around Paige and everyone’s lives have changed, but that’s okay.
“A time will come when I am able to... do all the everyday things and I will be wishing I can’t. At least she is here at the moment and that’s what is important.”
How respite care can lift weight of world off parents
Londonderry teenager Adam Campbell was a seemingly healthy boy until the age of three.
His mum Barbara was preparing to return to work after the birth of her second daughter Leah, nine months earlier.
But her plans — and hopes for a future for Adam — were cruelly shattered when he was diagnosed with a very rare disease that |results in the progressive decline of the brain.
Barbara (49) explained: “Adam was three when he was diagnosed. He was a perfectly normal boy until then.
“He took his first seizure and it was massive. When he woke up, he had special needs. I was in the shower and I heard my daughter crying so I got out and Adam was just lying there.
“It was unreal. My first thought was we would get him to hospital and everything would be OK, but the seizure went on for 45 minutes. It was really bad.
“Initially we thought that Adam would be a really bad epileptic, |but the next year he was diagnosed with leukodystrophy.” The condition can lead to a range of issues, including loss in muscle tone, seizures, loss of speech, vision, hearing and the ability to eat, and a slowdown of mental and physical development.
Barbara added: “Adam has had about eight or nine visits to intensive care over the years.
“We are managing to keep him out of there at the moment, but he is on a lot of medication. He needs 24-hour care. I look after his personal care and I sleep with him. Because his disease is progressive, he is now in a wheelchair.
“It really does take over your life, the hospice is a lifeline.
“I can’t believe the difference it makes in me when Adam comes in for respite. It makes me a better carer for him.
“The last time he went up to the hospice, he was going through getting up in the middle of the night and I was exhausted. I slept the entire time he was away.
“I can make time for Leah as well, and Adam loves coming to the hospice.”