Six-month old parents willing to beg High Court to keep daughter alive

Credit: Dean Gregory

The parents of a six-month-old baby with an incurable condition are to ask a High Court judge to rule that she “deserves a chance at life”.

Indi Gregory has mitochondrial disease, a genetic condition that saps energy from the body’s cells, but there is disagreement between her family and medics about her care.

She is being treated in paediatric intensive care at the Queen’s Medical Centre in Nottingham, but there is no highly effective treatment or cure for mitochondrial disorder.

Indi's parents say that despite her disability, she is the strongest little girl and a real fighter.

It is understood Nottingham University Hospitals NHS Trust will tell a judge at the Family Division of the High Court in London on Friday that it is in Indi’s best interests not to be given treatment to sustain her life in the event that her condition deteriorates.

The six-month-old girl has been battling mitochondrial disease - a disease that commonly affects the brain, muscle, liver, heart and kidney Credit: Dean Gregory

In a fundraiser set up by the family, they describe Indi's treatment as an 'injustice' and 'morally wrong'.

Dean Gregory wrote: "All this that is happening to our brave, beautiful daughter is injustice and this shouldn't be happening to children with disabilities its morally wrong [and] cruel."

The funds raised are intended to go towards Indi's legal aid as her parents contest the doctors decision in the High Court.

Since her birth, she's had a bowel operation in Leicester, and an operation to ease fluid on the brain.

What is mitochondrial disease?

When a person has mitochondrial disease, the mitochondria in the cells are not producing enough energy. Sometimes they are not very efficient or they do not work at all.

The parts of the body commonly affected are those that have the highest energy demands, such as brain, muscle, liver, heart and kidney. When these systems are effected mitochondrial disease is usually progressive.

Every person with mitochondrial disease is affected differently. Each individual affected will have a different combination of mitochondria that are working and not working within each cell.

It is understood the 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.

Michelle Rhodes, the chief nurse at Nottingham University Hospitals NHS Trust, said: “We wish to express our sympathies to Indi’s family at this very difficult time.

“We know that this is an extremely difficult case for all involved and we continue to support Indi’s family and provide specialised care for Indi."

The parents of Charlie Gard fought a fierce legal battle to have their son go to the US for treatment. Credit: PA

Indi has the same condition that affected baby Charlie Gard who died in 2017. He was born on 4th August 2016 but soon diagnosed with this syndrome,

Charlie’s parents, Chris Gard and Connie Yates, were embroiled in a five-month legal battle with the hospital where their son was being treated, to gain permission to fly him to the US for experimental treatment.

They fought with doctors from Great Ormond Street Hospital. But the High Court ruled in favour of the hospital and said Charlie should be allowed to die with dignity and Charlie died on July 28, just days before his first birthday.

£1.3 million donated by well-wishers to set up a "Charlie Gard Foundation" aims to help children in similar situations - like Indi.

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