BATTLE TO KEEP THEIR GIRL AT HOME HEARTLESS Terminally ill girl, 11, faces dying in agony in foster home after parents challenge docs’ decision to withdraw pain relief medication
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.
COLLAPSED
Karina said: “I saw the words ‘foster care’ and collapsed. I couldn’t read on. We love our children more than anything 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.”
KARINA DRISCOLL MUM TELLS OF FAMILY’S AGONY
■■To aid the family, visit justgiving. com/crowdfunding/melodydriscoll