Our sweet Aria, 3, could be the next Charlie Gard – she’s in mortal danger but the NHS can’t help
TUMBLING around on the floor with her big brother Oscar, happy three-year-old Aria Flynn is just like any other child her age.
Her playful smile lights up the room, giving no indication of the challenges she faces simply to survive.
Little Aria has a unique form of mitochondrial disease.
In fact, she is the only person in the world with her life-limiting condition, which is caused by a specific genetic mutation for which there is currently no cure.
It stops cells producing enough energy to support the body and means she cannot sit up, crawl, walk or talk — and has to be fed through a tube.
Doctors have told her parents, Andreea Halunga, 45, and Chris Flynn, 47, from Exeter, that a variant similar to Aria’s has only ever been found in two other children worldwide — and both died before their second birthday.
CLICK HERE TO DONATE TO HELP SAVE ARIA
The couple are now in a race against time to raise £4million to fund specialist medical research in an effort to provide fast-tracked, tailor-made treatment that could save their daughter’s life.
Chris tells The Sun: “No one else in the world has Aria’s exact gene mutation.
“When she had genetic testing the doctors said your kid is highly likely to be dead by two.
“They didn’t use those words, but that’s what they implied.”
‘We want a story of triumph not tragedy’
Mitochondrial diseases are a group of genetic conditions for which British children Charlie Gard and Indi Gregory both fell victim, making worldwide headlines.
Charlie, from London, was 11 months old when he passed away in 2017 after his devastated parents lost a court battle to keep him alive.
Eight-month-old Indi’s family, from Ilkeston, Derbys, were unsuccessful in their fight to stop her life support being switched off in November 2023.
Their parents wanted specialists to do more to give their children the chance to live longer.
Chris attended Indi’s funeral after the two families met through a Facebook support group.
He says: “Charlie and Indi are two different cases, but they died of the same disease.
“It’s a different route to the same end.
“We don’t want the same for Aria.
“We want her story to be one of triumph, not tragedy.
“Aria is in mortal danger every day.
“As her parents, we’re destroyed, and even more so we are the ones that have to try to fix this.”
Without urgent intervention, Aria’s organs will eventually not have enough energy to function and will slowly shut down.
Aria came close to dying 18 months ago after catching respiratory syncytial virus (RSV), a common cause of coughs and colds, from Oscar.
Aria will not survive unless we find a bespoke treatment. We are watching her slip away in front of us
Dad Chris
She spent six weeks on a ventilator at Bristol Children’s Hospital fighting for life.
Chris says: “Against the odds, she made it to her third birthday.
“However, we live one day to the next, as Aria will not survive unless we find a bespoke treatment.
“We are watching her slip away in front of us.
“Doctors in the NHS can’t help her, we are on our own.”
The couple noticed something was wrong with Aria shortly after she was born.
Andreea recalls: “She was sleeping all the time, was very weak and floppy.”
And Chris says: “It was like holding a water balloon.
“She was vomiting up to 20 times a day.”
They were then given Aria’s devastating diagnosis when she was six months old after doctors at the Royal Devon and Exeter Hospital carried out specialist tests and genetic screening.
Andreea, a former senior lecturer in Econometrics at University of Bath, says of the heartbreaking moment they got the news: “First it was shock, then total despair when they said there was nothing they could do.”
Chris, who runs his own product design consultancy firm, adds: “We were given that news, then nothing.
“It was a case of, ‘You’re on your own, it’s not understood and there’s nothing that can be done’.”
Scientists call Aria’s unique genetic mutation N=1 — a disease that just one person has.
Chris explains: “The mutation was checked against our genes and Aria did not inherit this disease from us.
“It is what is called ‘de novo’ and this means at the point of conception, an error occurred in making her DNA, misspelling the code for her gene LONP1.”
The LONP1 gene is like a tiny instruction manual for making a protein that works in our cells’ ‘powerhouses’, known as mitochondria.
When there is a mutation, it disrupts this process, meaning cells cannot produce enough energy.
For Aria, a common cold, such as RSV, could prove fatal.
Almost all children get RSV at least once before they are two, and while the vast majority recover within a couple of weeks, it can become life-threatening, particularly for babies, those with a weaker immune system and heart or lung conditions.
Andreea is from Romania but has lived in the UK for 20 years.
‘We’re losing her – go and get help’
She says of Aria’s bout: “We were on the bronchiolitis children’s ward.
“Aria went into catabolic shock because she doesn’t have the ability to fight something like we do.
“She fell unconscious and I remember saying to Chris, ‘We’re losing her. Go get help’.”
Chris says: “I have a recollection of holding her in my arms and kicking down the door because all the doctors were in a meeting.
“A crash team came up from the intensive care unit, who we have to thank for saving her life.
“The reality is we could lose Aria this winter, we don’t know if she could make it until next summer.
“If she were to fall unwell, like she did with RSV, she’d receive palliative care.”
Time is running out for Aria and some organs are already failing.
Chris says: “A specialist said she is developing kidney disease and would require a transplant if things worsen.”
Aria’s smile lights up the room. She loves music. We have a video of her in intensive care, where there was a music therapist playing the ukulele and she started clapping
Mum Andreea
Despite Aria’s limited abilities due to mitochondrial disease, her parents say she is a happy child.
She was born deaf but can now hear due to cochlear implant surgery when she was 17 months old.
Andreea says: “Aria’s smile lights up the room.
“She loves music.
“We have a video of her in intensive care, where there was a music therapist playing the ukulele and she started clapping.”
Andreea says Aria also has an “adventurous” streak, revealing: “Sometimes, I will come into the living room to find she has tried to escape from her chair.
“She’s slipped down, giggling to herself.”
Chris adds: “I took her to the skatepark and she was laughing as I took her up and down the ramps in the buggy.”
Aria also enjoys rolling on the floor with her five-year-old brother Oscar, who was born healthy.
Andreea says: “Oscar has been making paper aeroplanes.
“And he says, ‘I’m trying to sell these to raise money for Aria’.”
Andreea has given up work to care for her daughter full-time and to research possible treatments.
Chris says: “Andreea is strong and stoic.
“She bravely battles on and is a workaholic when it comes to Aria’s condition.
“She is constantly reading research papers.
“We both have our skills and try to be a team.”
‘Science is there, we just need the funds’
So far, the couple has raised just over £22,000 of their initial £250,000 target via a JustGiving page.
But realistically they need £4million for treatment.
The money has already helped fund the first phase of a project with the US therapeutics company Unravel Biosciences, looking at drugs for other conditions that could be repurposed for Aria’s.
How to donate
TO find out more about Aria’s story, go to curelonp1.com/.
To donate, scan the QR code below or visit justgiving. com/campaign/solesurvivor
Chris explains: “This is the fastest short-term project, which we hope will produce viable safe drugs, ones that are already approved by the United States Food and Drug Administration for other diseases, that we can use to treat Aria, to help reduce the progression of mito.”
They have also set up a website – CureLONP1.com – to find researchers in LONP1 and potential treatments for Aria.
Andreea adds: “We want to discover others around the globe with LONP1 mutations, as a combined therapy could be developed for those kids, too.
“If your child has an LONP1 mutation, reach out to us.
“We are collecting researchers and have already uncovered a deeper understanding of her disease, which then opens doors for treatments to be designed.
“LONP1 is vital to life, and better knowledge of it could help humanity.
“The science is there, we just need the funds.”
The couple are urgently appealing to major donors and Sun readers for donations.
Andreea says: “Learning more about LONP1 can help everyone because it is linked to so many things, such as cancer, Alzheimer’s disease and diabetes.
“It wouldn’t just potentially save Aria’s life, it could help millions of people.
“We ask that people donate what they can and share her story before time runs out.”
Charlie's legal fight touched whole world
THE case of Charlie Gard grabbed the attention of the world in 2017 when his plight became a highly publicised legal and ethical battle.
Charlie was born in August 2016 with the rare genetic condition mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage.
His parents, Connie Yates and Chris Gard, from West London, sought to take him to the US where doctors were offering an experimental treatment called nucleoside that they believed might help improve his condition.
Charlie’s parents raised nearly £1.4million to fund his care after launching an appeal on GoFundMe.
However, doctors at Great Ormond Street Hospital in London, where Charlie was being treated, argued that the treatment was unlikely to be effective and could cause him further suffering.
They wanted him to “die with dignity” and recommended withdrawing life support.
The disagreement between Charlie’s parents and the hospital led to the High Court, the Court of Appeal, and the Supreme Court.
Ultimately, the courts backed the hospital’s assessment that the experimental treatment would not be in Charlie’s best interests.
A statement issued by the European Court of Human Rights said it was most likely Charlie was “being exposed to continued pain, suffering and distress” by being kept alive and further treatment with “no prospects of success . . . would offer no benefit”.
Charlie’s life support was withdrawn, and he died on July 28, a week before his first birthday.