Six-month-old baby’s parents will beg High Court judge to give her a chance to stay alive as she battles same condition suffered by Charlie Gard
- Doctors said it would be kinder to let Indi Gregory die than give her treatment
- The six-month-old with mitochondrial disease is at Queen’s Medical Centre
An ill baby girl’s parents will this week beg a High Court judge to grant her a chance to stay alive.
Indi Gregory faces having life-saving treatment denied after doctors said it would be kinder to let her die.
The six-month-old girl is battling mitochondrial disease – the same condition that affected baby Charlie Gard.
Little Indi’s parents say that despite her disability, she is a happy baby who responds to their touch.
Her father Dean Gregory told the Mail: ‘Indi is a strong little girl and a real fighter. She deserves a chance at life. The hospital wants to take this away and we are beyond horrified.’
The six-month-old girl is battling mitochondrial disease – the same condition that affected baby Charlie Gard
Little Indi’s mother Claire Staniforth, 35, is said to be struggling to cope with the bombshell from the hospital
Indi is being treated in paediatric intensive care at the Queen’s Medical Centre in Nottingham, where her parents and elder sisters keep vigil.
Earlier today, her mother Claire Staniforth and Mr Gregory, who are engaged, were devastated to be informed there would be a legal hearing on Friday to determine their baby daughter’s fate.
Nottingham University Hospitals NHS Trust will tell a judge at the High Court in London that it is in Indi’s ‘best interests’ not to be given treatment to ‘sustain her life’ in the event that her condition deteriorates.
Mr Gregory said: ‘Indi has been in hospital all her young life, and she has had ups and downs, but during the good times she has been on a normal ward, able to breathe by herself and babble happily.
‘She is not in pain and is clearly comforted by her mum and dad, because her heartrate is steady and calm when she is being cuddled in our arms.
‘She just needs time to recover so we can work out a plan to care for her at home.
‘We know she will never be the same as other children, because she has several disabilities, but it breaks our hearts to think that doctors don’t want to give her that chance at life.’
Mitochondrial disease is a cruel and rare genetic condition that saps energy from the body’s cells. There is currently no cure. Charlie Gard died from it in 2017 after his parents fought and lost a court battle to take him for pioneering treatment abroad.
As well as suffering mitochondrial disease, baby Indi has a hole in her heart and soon after her birth in February this year she needed operations on her bowel and her skull to drain fluid.
Baby Indi’s father, Dean Gregory, 37, told the Mail that she is a ‘strong little girl and a real fighter who ‘deserves a chance at life’
As well as suffering mitochondrial disease, baby Indi also has a hole in her heart
Indi is being treated in paediatric intensive care at the Queen’s Medical Centre in Nottingham
Soon after her birth in February this year, Indi needed operations on her bowel and her skull to drain fluid
Doctors are understood to have concluded that Indi suffers from so many profoundly serious conditions that invasive treatments would not be in her best interests
Mr Gregory says that during the good times Indi has been on a normal ward, ‘able to breathe by herself and babble happily’
Mr Gregory, 37, who works in pharmaceuticals manufacturing, said: ‘She could have surgery to fix her heart, but we don’t think the doctors think it is worth it because of her other conditions.’
He said Ms Staniforth, 35, for the couple’s gym health supplements business, was also struggling to cope with the bombshell from the hospital.
The couple, who live in Ilkeston, Derbyshire, have spent the past six months at their daughter’s bedside, along with the three other daughters they have between them: Vienna, six, and then Olivia, 13, who is Ms Staniforth’s daughter from a previous relationship, and a 19-year-old from Mr Gregory’s previous relationship, also called Olivia.
Mr Gregory said: ‘Look, if we thought Indi was brain-dead we would be utterly crushed but we wouldn’t be disagreeing with the doctors.
‘But our daughter responds to us, and on her good days she is babbling, making noises, moving all her limbs.
Indi’s parents, who live in Ilkeston, Derbyshire, have spent the past six months at their daughter’s bedside at the Queen’s Medical Centre in Nottingham
Elser sisters Vienna, six, Olivia, 13, who is Ms Staniforth’s daughter from a previous relationship, and a 19-year-old from Mr Gregory’s previous relationship, also called Olivia have kept vigil by Indi’s bedside
Little Indi’s parents say that despite her disability, she is a happy baby who responds to their touch
Mr Gregory said that he understood that Indi will never be the same as other children, because she has several disabilities, but urged doctors to give her a ‘chance at life’
‘She can definitely experience happiness. She cries like a normal baby. We don’t know how well she can see yet, but she follows the action if watching an ipad and she looks at us when we speak.
‘We know she is disabled, but you don’t just let disabled people die. We just want to give her a chance.’
He added: ‘She has had infections and seizures, but she is being discriminated against because she has mitochondrial disease. If a healthy child got an infection, they would be treated accordingly, but if Indi gets an infection, the doctors don’t seem to want to give her a fighting chance to get better.
‘They are saying she should get palliative care only. She is disabled but that does not mean she does not have a good quality of life.’
Doctors are understood to have concluded that Indi suffers from so many profoundly serious conditions that invasive treatments would not be in her best interests.
The hospital has held several meetings with the parents to set out why they think it would be unfair on Indi to carry out resuscitation, which can be painful, if her condition deteriorates.
After the hospital and the parents failed to agree, the hospital decided to ask the High Court to make a ruling.
A judge will be asked on Friday to authorise doctors to stand back from carrying out life-saving treatment if Indi needs it to stay alive.
The hospital trust has been contacted for comment.
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