Terminally ill Melody Driscoll winces in pain in an image which leaves her loving parents in tears.
The 11-year-old, who has cruel Rett Syndrome, can’t walk or talk and faces unbearable agony.
No one knows just how long the bubbly girl – befriended by pop superstar Ed Sheeran – has left.
And in a shattering blow, she could be taken from her parents and condemned to an agonising death in foster care.
Parents Karina and Nigel risk losing her after launching a legal battle over care at London’s King’s College Hospital.
The hospital is weaning Melody off morphine and steroids – which control her pain – because they could lead to fatal liver damage.
Karina, 35, is suing the hospital in a bid to force medics to give the drugs.
The couple fear the shock of withdrawing the medication could spark a cardiac arrest.
The mum – also battling for the right to have Melody back home – said: “This is the hardest decision I’ve had to make but I know I am doing right for Melody.
“Seeing her in pain is heartbreaking but the thought that the hospital could withdraw the pain relief and we could lose her to a foster family as well is unbearable.
“I won’t give up the fight for my daughter or for her quality of life.”
The couple from Croydon, South London, believe they should be able to make decisions over her end of life care.
They say their pleas have been ignored and they have been given no choice but to sue because they cannot watch Melody suffer any longer.
But social workers have issued a letter claiming they are unfit to care for Melody and asking them to instruct lawyers to defend their parental rights.
Karina continued: “Our brave girl, who we have fought for, for over 11 years, could end up dying in desperate pain, surrounded by strangers instead of her family all because we won’t stop fighting for her quality of life.
“I know these drugs might make Melody die sooner but she’s already terminally ill so we are going to lose her – we know that
“We want as much time with her as we can, but understand that should be about quality, not quantity. I’d rather have one more year with Melody where she was not in pain, than five years of watching her like this. How can we be called unfit parents for fighting for that?”
When the Sunday Mirror visited the family at home, Karina and Nigel, 46, broke down as they showed us a video of Melody in the throes of a pain episode.
Heart-shaped medical tape holds tubes to her cheek.
The couple astonishingly claim that medics have said their daughter is not in agony, but simply badly behaved.
They have now enlisted the help of Charles Da Silva, the lawyer who acted for the parents of baby Charlie Gard , and hope to crowdfund the £50,000 legal bill.
Charlie died last July, aged 11 months, after his parents lost a legal wrangle with Great Ormond Street Hospital .
Karina went on: “Every night, I come home from hospital and sob myself to sleep because I can’t bear to see her suffer. And the idea of her being taken into foster care has almost broken us.
“Her family is all she has, we are her only comfort. If she’s sent to live with strangers, she’ll spend every day in agony until she dies. How could I forgive myself if I let this happen?
“Melody can’t speak, so we are her voice. As she screams, she points to her stomach, as if to say: ‘Why aren’t you helping me, Mum?’ It’s absolutely heartbreaking. It’s destroying our family and we’re struggling to go on.”
Karina, also mum to Adam, 14, Joshua, five, Logan, three, and nine-week-old Kobi, feared for Melody when she struggled to feed as a baby.
Around 18 months, the tot lost the ability to sit up and could no longer say the handful of words she’d learned.
Six months later, she was diagnosed with Rett Syndrome, the nervous system disorder which claimed the life of soccer Wag Coleen Rooney’s sister Rosie, 14. Karina told how the reality of Melody’s situation hit her.
She said: “It was hard to accept that I’d never see Melody grow up, or watch her walk down the aisle. I dreamed of the things we’d do as mum and daughter, and it was ripped from me. I realised we had to concentrate on giving Melody the best life we could, even if it was going to be a short one.”
Melody spent large parts of the next five years in hospital and Karina, a pub singer, and Nigel, a panel beater, had to give up work to care for her.
In 2013, doctors prescribed morphine and steroids to manage Melody’s stomach pain and trained her parents to administer the drugs.
Karina and Nigel say this gave Melody a new lease of life. She’d giggle as mum painted her nails while she watched her favourite music videos.
She even struck up a friendship with pop hero Ed Sheeran, 26, who visited her in hospital and then invited her to a private show at London’s O2 Arena.
Karina said: “She’s such a mischievous, fun-loving girl. Even though she can’t speak, she has an amazing personality and adores her brothers. We’ve always known we could lose her at any time, but we’ve had many more years than we expected and we’ve learned to appreciate every day.”
But the family’s life was turned upside down last October when doctors said they planned to wean her off drugs which controlled her pain.
Melody had been in hospital since July after suffering a collapsed lung and suspected sepsis . The couple watched helplessly as she spent hours crying in agony as doctors replaced morphine with paracetamol.
Nigel said: “It’s so hard to watch her suffer when we know there is something which could take the pain away in minutes. We’ve been told she already has liver damage because she’s been tube-fed for so long but we feel none of the doctors can see the bigger picture.”
Doctors say Melody could die at any moment, as sudden heart failure is common in girls with Rett Syndrome.
In a desperate bid to do the best for their girl, the couple asked their local council for a social worker. But that backfired spectacularly last month when social services visited them at Melody’s beside and handed over a letter which told of their intentions to take her into care.
The document – seen by the Mirror – says medics have described the couple as “difficult”. It also expresses fears Melody would suffer “significant harm” in their care.
Karina said: “I saw the words ‘foster care’ and collapsed. I couldn’t read on. We love our children more than any-thing and we’d never harm a hair on their heads. I asked for a social worker because I thought they’d help us do the best for Melody. Now I realise how naive we were. Parents are powerless.
“How do we begin to explain to the other children that Melody might be taken from them? The time we have left is so precious and I want her to spend it at home, making memories with her family – and not in agony.”
King’s College Hospital NHS Foundation Trust said: “All decisions taken by our expert clinical team are in our patients’ best interests. We are unable to comment further on this case.”
Croydon Borough Council said: “It is always very difficult for all concerned to ensure the right decisions are made for children who have complex health and care needs when there are differing medical options. We always seek to work with parents and hear the views of the child and the family.”