Tragic Belle Curran, from Pembrokeshire, was diagnosed with interstitial lung disease when she was just two
A brave 10-year-old girl who fought a lifelong battle against a cruel lung disease has died in hospital while on the waiting list for a transplant.
Belle Curran needed a lung transplant to survive, having been diagnosed with interstitial lung disease when she was just two.
The condition meant her lungs were stiff and hard, and not spongy like they should be – making it difficult for her to breathe.
Belle had to breathe three times faster than other children as she fought against the condition, Wales Online reports.
Her mum Stella said she was a “determined little girl” who was “very vocal about her choices” and didn’t like to be treated any different to her friends.
She had described how Belle and her friends were “like a little team” and that they would help her when she was in school or in girl guides.
Belle, whose mum described as “10 going on 18”, had also decided she didn’t need the money she and her supporters raised – instead insisting £30,000 was donated in her name to five different charities.
The heartbreaking announcement about her death, made by her family, said: “Our brave Belle sadly lost her fight and passed away peacefully on the 5th April. Thank you all so much for your love, kindness and support.”
Belle was on an emergency waiting list for a lung transplant at Great Ormond Street Hospital.
The schoolgirl, from Wolfscastle in Pembrokeshire, needed a wheelchair to get around and was dependent on a face mask to deliver oxygen to keep her alive.
She needed a double lung transplant to survive and her mum, Stella, had described how she woke up every day hoping a donor would have become available, but also knowing that if that does happen, another family somewhere will have lost a child.
Last month, Mrs Curran said: “If Belle gets new lungs, then another family will have been through a horrendous time.
“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.”
While some children with the disease manage to live with it, Belle’s lungs had got worse and worse.
In the past year, her condition meant she had been “poorly more than she has been well”, her mum said previously.
She hoped that by speaking about life with the disease, more people will understand the value of organ donation.
“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 meant she is susceptible to infection and didn’t go to school between October and April, and instead being homeschooled. Her mum was planning for her to do shorter hours when heading back to school this spring.
“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 would head to the local girl guides where she was 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.
On Mother’s Day, Stella wrote a beautiful but heartbreaking post on the Belles Story Facebook page from the University of Wales Hospital, where she had been by Belle’s side. The page was set up to raise awareness of organ donation.
She wrote: “Happy Mother’s Day to all you wonderful mummies out there. It’s a bit of a different one for us this year – but sitting here in UHW holding Belle’s hand, watching the monitors, wishing the numbers to be right, stroking her hair, holding her when she’s anxious, getting her sips of water, rubbing her feet, listening to Bake Off endlessly on repeat, holding my breath when the doctors arrive , the phone calls at 2am needing her Mum, the shivers when test results come back, changing her bed, sponging her little body clean and tucking Bob up close to her cheek is a privilege and I wouldn’t be anywhere else but right here waiting and praying for her to get better.
“She is still showing her determination and fight and is slowly showing improvement. She’s sleeping a lot of the time, resting her little body , letting it heal which is good, she’s battling two infections with the help of antibiotics and lots of other medications and an amazing team of consultants, doctors, and nurses – I’ve got my Mother’s Day gift , she’s lying here her hand in mine , I’m just the luckiest mummy and am eternally grateful.”
Belle was well-known in Pembrokeshire with various fundraisers being held for her. Tributes have been pouring in for Belle on the Facebook page.
One said: “There are no words that I can say. Apart from thank you for allowing such a precious girl like Belle to be such an important part of our lives. Belle taught Lillie so much and Lillie will forever take a piece of Belle in her heart wherever she goes. We are already talking about her and we will continue to do so.”
Another said: “She was and will always be a superstar and an example to us all of determination and bravery.”
Another tribute said: “That beautiful, strong, brave and inspirational young lady touched the hearts of everyone she knew and battled so hard through every day.”
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.
Mrs Curran said Belle was “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”.
She 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.