Parents of a seriously ill girl will never stop fighting to be allowed to bring their daughter home so her last memories are not of a hospital.
Melody Driscoll went into Great Ormond Street Children’s Hospital for an operation last October and was only supposed to be in there for five days.
But 10 months after the biopsy of her large intestine she is still there and her mother Karina worries that every day could be her daughter’s last.
She has the rare neurological disorder Rett Syndrome, which causes problems with her brain, as well as other underlining issues.
These include intestinal failure, internal bleeding, swelling of her body both internally and externally and her gut does not function so she has to be fed nutrients directly into her bloodstream through a tube.
To deal with her pain she is connected to a morphine and ketamine pump 24 hours a day.
The seven-year-old has been ready for discharge since February but officials from Croydon Clinical Commissioning Group (CCCG) will not let her leave hospital until a home nurse support package has been found.
Mrs Driscoll said: “I do not want her last memories to be cooped up in a hospital. She’s got two brothers and one on the way, Melody is very family oriented.
“She loves people around her and she’s a proper little girl and she’s not got the choice to be that little girl.
“It has been absolutely heartbreaking because I know that I can give her the care that she needs, seeing the mistakes happening I know that they could take my daughter’s life.
“When we go in and see her she blanks us for the first 10 minutes and I think she thinks we’re to blame for it because we are not taking her home.
“We have always done whatever we can for Melody and her needs come before our needs.
“I have always said that Melody will tell me if she doesn’t want to fight anymore but all the time she’s fighting I will fight with her and that’s all I have ever done is keep fighting.”
The CCCG is looking to find a company that will be able to provide a suitable home nurse support package but so far 13 companies have pulled out because of the complexity of Melody’s needs.
Mrs Driscoll, 37, wants to be allowed to take Melody back to her home in New Addington while the CCCG finds a home support package instead of her daughter having to wait in hospital.
NHS Croydon Clinical Commissioning Group's assistant clinical chairman Dr Agnelo Fernandes: “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 she needs highly specialised care.
"This is not routinely available in the community and we have had to plan and commission a unique, individual care package for her.
"We have been actively working on this with the involvement of a multidisciplinary team of local healthcare professionals who have been working closely together to progress the complex planning required to ensure that Melody can go home as safely as possible.
"We have encountered significant problems with identifying an appropriate and willing healthcare provider for Melody’s safe care at home and we continue to explore all possible options.
“We have been liaising with the family throughout this process to make sure that they are kept fully up to date with progress and we will continue to do so.
"We understand how difficult this has been for them and want to reassure them that we are doing everything we can to help Melody to go home as soon as possible.”