Belle Curran is 10 years old. Like many little girls her age, she loves the colour pink, playing with her friends and watching her favourite TV show, Masterchef.
But unlike her classmates, Belle needs a wheelchair to get around and is dependent on a face mask which delivers oxygen to keep her alive.
Her tiny lungs are so diseased they can no longer do the job they need to do. Belle needs a double lung The incredible living donors who risked their own health to save their loved ones if she is to grow up to be a healthy adult.
Every day, her mum Stella wakes up hoping a An inside look at the life of Wales' leading transplant surgeon will become available, but also knowing that if that does happen, another family somewhere will have lost a child.
"If Belle gets new lungs, then another family will have been through a horrendous time," said Mrs Curran, who lives in Wolfscastle, in Pembrokeshire .
"I just hope that somebody somewhere might think they can do the biggest thing and give the gift of life to Belle. I hope someone will know that through organ donation, something good can come out of something as terrible as the death of a child."
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Belle has suffered from interstitial lung disease since she was diagnosed when she was two. It means her lungs are stiff and hard and not spongy like they should be.
It makes it so difficult to breathe, Belle has to pant and breathes around three times faster than other children. Breathing that fast uses up so many extra calories, Belle often runs out of energy and struggles to keep weight on.
While some children with the disease manage to live with it, for Belle, her lungs are getting worse and worse.
In the past year, her condition has meant she has been "poorly more than she has been well", her mum said.
Mrs Curran hopes that by speaking about life with the disease, more people will understand the value of organ donation . Belle is on an emergency waiting list for a lung transplant at Great Ormond Street Hospital.
"Sadly, because Belle's lung cavity is so small, she can only receive a child's pair of lungs," Mrs Curran said.
"There is just no way lungs from an adult would fit in the tiny space."
Belle's condition means she is susceptible to infection and doesn't go to school between October and April, and is instead homeschooled.
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When she heads back to class at Spittal School this Spring, it will be for shorter hours than her classmates.
"She will go in at 11am and then stay until the end of the school day," said Mrs Curran.
"We will see how her energy levels are. She is quite a determined little girl and is very vocal about her choices.
"Belle doesn't like to be treated any different to her friends, she just wants to get on and learn."
Every Friday, Belle heads to the local girl guides where she is treated like any other child.
"Her and her friends are like a little team," said Mrs Curran.
"They all understand her difficulties, check her oxygen levels and hold doors open for her. They make no fuss or judgement, and as a mum I'm so grateful for that."
After a presentation to her class about organ donation, one little boy went up to Belle and told her that if he died before Belle, he would tell his mum to give Belle his lungs.
Mrs Curran said children were generally more open to the idea of organ donation compared to adults, which gives her hope for the future.
An organ donation opt-out system has been in place in Wales since 2015 , but only applies to adults. In September 2018, NHS figures showed only 48% of families supported donation for a relative aged 17 and under last year. That compares to an average of 66% families agreeing for relatives of all ages.
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Mrs Curran wants this attitude to change, admitting that this is for wholly selfish reasons.
"I'm sure in years to come things will change, but I need it to happen now," she said.
The family are playing a waiting game with no defined timescale. Mrs Curran, 42, has given up her job at Lloyds Bank so she can care for Belle full-time.
"We're waiting for just one phone call, and in the meantime we're all hanging on in there, trying to keep life as normal as possible for Belle," explained her mum.
"Night times are a bit haphazard as Belle goes on to a ventilator, which effectively breathes for her, to give her lungs a rest.
"She also has a peg in her tummy for overnight feeds, because it's difficult to get enough calories in to keep her weight up."
Machines constantly monitor her oxygen levels.
"It's just our life now," said Mrs Curran, whose husband, John, works as a mechanic.
"When you're in something like this, which has progressed over the last eight years, you just adapt. You don't realise what life used to be like until you stop and look back, and remember you didn't have to get up in the middle of every night."
During those eight years, Belle has become a local celebrity in Pembrokeshire with various fundraisers being held for her.
Belle, who is "10 going on 18" said her mum, decided she didn't need any money and instead asked for it all to be given back to charity. Now, mother and daughter run 'Belles Story' which they hope will become its own charity very soon.
"Having something positive to focus on gives us something else to think about and just helps to take the edge off things," said Mrs Curran.
So far, Belles Story, with the help of Haverfordwest Ladies Circle, has raised over £30,000 for five different organisations: Puffin Ward at Withybush Hospital, Noah's Ark Children's Hospital, Ty Hafan, Great Ormand Street Hospital (Heart & Lungs), and Make a Wish. All have helped Belle at some point in her short life.
"Belle is such a determined, funny and knowledgeable girl, and nothing will get in her way once she puts her mind to it. She never complains about her health and is extremely positive," her mum said.
"Giving someone else the chance of a new life is the best thing anyone can do.
"Everyone and their families need to get on that list and talk to each other. Don’t wait for the moment to strike, make the decision now. It will help Belle to have the life she so deserves.
