Melody Driscoll, 11, suffers from Rett Syndrome and cannot walk or talk
Distraught parents are terrified their 11-year-old daughter will be taken away from them as they fight for her to be given pain medication.
Melody Driscoll – who has undergone more then 40 operations – suffers from Retts Syndrome, a rare genetic disorder that affects brain development and results in severe mental and physical disability.
Doctors at King’s College Hospital in London are weaning her off morphine over fears that it could result in potentially fatal liver damage.
The parents are suing the hospital in a bid to get the painkiller for their daughter.
They have enlisted help from Charles Da Silva, the lawyer who worked on the Charlie Gard case, and expect the bill to reach £50,000. The family are trying to raise money to cover the legal costs.
After contacting social services to see if they could help them fight the hospital’s decision, the couple were given a letter which read that their ill daughter could be taken into care.
In the letter, doctors say the parents are ‘difficult’ and say Melody could be at risk from ‘significant harm’.
The parents are terrified that their beloved daughter could go into cardiac arrest from withdrawal.
Doctors at King’s College Hospital in London are weaning Melody off morphine over fears that it could result in potentially fatal liver damage (pictured: Melody with parents Karina and Nigel Driscoll)
Melody’s heartbroken mother, Karina Driscoll, 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,’ reports the Sunday Mirror.
After contacting social services to see if they could help them fight the hospital’s decision, the couple were given a letter which said Melody could be taken away from them
According to the parents, medics have said Melody is naughty rather than in a huge amount of pain
The parents, who live in Croydon, are distraught at seeing their little girl in so much pain.
Melody was not predicted to live beyond the age of five, but she is now 11 years old. She is unable to walk or talk.
The child was put on morphine and steroids in 2013, and her family say they save a massive improvement in her well being.
Karina, who has four other children with husband Nigel, explains: ‘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
Melody’s mum captured the heartwarming moment Ed first paid a surprise visit to Melody at Epsom Hospital in Surrey
‘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?’
According to the parents, medics have said Melody is naughty rather than in a huge amount of pain.
The parents, who live in Croydon, are distraught at seeing their little girl in so much pain
Melody met her favourite singer Ed Sheeran, who came to hospital to see her.
Her anguished father 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.’
A spokesperson for 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.’
In a statement, 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.’
WHAT IS RETT SYNDROME?
Rett syndrome is a genetic disorder that affects all body movement.
Development appears normal until the child is six to 18-months-old, but they then start suffering loss of speech and balance.
The condition can also lead to scoliosis or seizures.
Treatment such as physiotherapy can help slow the rate of movement loss, but there is no cure for the condition.
Sufferers can live to their 40s but most die before 25.