THE parents of a seriously ill little girl have pleaded that she be allowed home so her "last memory is not of being in hospital".
Seven-year-old Melody Driscoll has spent the last ten months in hospital recovering after an operation.
A senior doctor has said she is ready to be discharged but health bosses will not let her go home because they are worried her mum Karina Driscoll and step-father Nigel will not be able to cope.
Melody has Rett syndrome, a rare genetic disorder which causes severe physical and mental disability.
She already required 24-hour care before her condition led to further complications, such as intestinal failure and internal bleeding, for which she is being treated in hospital.
Due to the complexity of Melody's care, Karina and Nigel have been unable to secure nursing support for their daughter.
But they have received extensive training in order to treat Melody themselves, as they did before the operation at Great Ormond Street, and argue that she should be allowed home to enjoy a better quality of life.
Rett syndrome, which affects around one in 12,000 females, is a life-limiting disorder and doctors have said they do not know how long Melody has left to live.
Her parents want Melody to be allowed to return to her home in New Addington and spend that time with her family.
Karina, 32, said: "Melody could have another ten or 15 years, but she could die tomorrow, and I don't want her last memories to be of being in hospital without her family."
A Facebook page called 'Help Get Melody Home', created last Saturday, had been backed by more than 1,500 people as the Advertiser went to press, and the family are in the process of launching a petition.
Melody went into Great Ormond Street for an operation on October 26 last year, after months of increasingly serious health issues, including regular episodes where she would vomit blood, her eyes would swell up and her finger and toenails would turn black.
The procedure, to remove a section of her bowel, was a success but uncovered other problems. She was started on a morphine and ketamine pump to relieve pain following the operation but, each time doctors tried to take her off the dosage, the swelling, bruising, and bleeding would return.
Melody now requires up to 40 doses of morphine/ketamine a day, and on top TPN (Total Parental Nutrition) which means she is fed thorough an intravenous drip.
Her condition gradually stabilised and, in February, her parents were told she was ready to be discharged.
However, health professionals led by Croydon Clinical Commissioning Group (CCG) will not sanction the move without nursing support at home. Karina says that, due to the complexities of Melody's case, 13 care packages have fallen through.
Melody's parents are trained in administering TPN, intravenous therapy, oxygen and resuscitation, and insist they can manage looking after her at home on their own until nurses are found.
"I can understand [the panel's] concerns, but they're not giving us a chance to show we can cope," said Karina.
"When we had Melody at home before her operation she was always in pain. She would lash out and pull her tubes out. Now her pain is under control, she's a lot easier to manage."
Karina and Nigel, who have two other children, also want to take Melody home after becoming concerned about the quality of care she has received at Great Ormond Street. In recent weeks, she has been moved to a hospital in Surrey.
But their main concern is the effect being in hospital for such a long period of time is having on their daughter, who is unable to speak because of Rett syndrome, which begins in early childhood.
"Before the treatment she didn't have any quality of life because she was always in pain," said Karina.
"The hospital has given her the chance to lead a better life but, by keeping her there, they are denying her the opportunity to live it. She should be at home playing, spending time with her family just like a little girl should.
"She hates it there. If she could talk and say she wants to go home, they would have to find a way. But, because she can't voice her opinion, it doesn't seem to matter how long it's going to take.
"So she's withdrawn herself. It's like she's going through depression. When we're there she ignores us at first. It's like she blames us because she's being kept somewhere where she feels so sad."
Nigel said: "Sometimes I feel like she has given up. She's not interested in playing or interacting. It's so heartbreaking. I think she blames us for not taking her home.
"Our main concern is getting Melody home because we don't know how long we have got her for.
"I would hate myself if we lost her and her last memory was of being in hospital.
"We know there would come a time when we have to take her back, but at least we will know we've done all we can for her before that happens."
Health body: We are working hard to get Melody back home
THE health group that ultimately has the decision over whether Melody can leave hospital says it is "working hard" to ensure she can go home.
Croydon Clinical Commissioning Group, supported by other other health professionals, says it is trying to find a care package to meet her complex needs, but that it has met "significant problems" due to their complexity.
Dr Agnelo Fernandes, assistant clinical chairman, said: "We understand how important it is for Melody and her family that she is able to leave hospital and be looked after at home.
"We are working as hard as we can to enable Melody to go home but she has very complex health problems and needs highly specialised care. This is not routinely available in the community and we have had to plan and commission a unique care package for her.
"We have encountered significant problems with identifying an appropriate and willing healthcare provider for Melody. We understand how difficult this has been for her family and want to reassure them that we are doing everything we can to get Melody home as soon as possible."
Facebook page attracts hundreds of supporters and messages of goodwill
KARINA Driscoll has set up a Facebook page to highlight her call for Melody to be discharged from hospital and treated at home.
The group has attracted more than 1,500 'likes' since it was created on Saturday and many people have left messages of support.
Carolyn Brathwaite wrote: "Wishing you lots of luck, your little girl deserves the right to be back at home in her own surroundings with those who love her."
Rhawnie Cyr posted: "God Bless Melody and may she get home today or ASAP to be with those she loves and who love her. This will ensure the happy life she so deserves."
Cheryl Creswick said: "I wish you luck bringing this little girl home. Sometimes home is the best environment when we are ill. The care and love, whatever happens, are important things to feel, especially for one so young.
"If you, the parents, are willing to look after Melody at home, then you should be given that opportunity."
Valerie Hance wrote: "I hope you get her home soon.
"She deserves to be with those that love her, not in hospital.
"No matter how good they are, it's not the same. Good luck I will pray for you all."
Visit Melody's page on Facebook here
