Indi Gregory loses her fight for life: ‘Angry and heartbroken’ parents who fought to continue treatment for the terminally-ill eight-month-old say she has passed away after ‘the NHS took away her chance to live’

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed.

Eight-month-old Indi, who suffered from an incurable genetic mitochondrial disorder, had been involved in several cases in the Supreme Court and the Court of Appeal.

Judges ruled she should die, but last week Italy intervened and made her a legal Italian citizen at the last minute to take her to a hospital in Rome for treatment.

But on Friday that attempt failed and her parents Dean Gregory and Claire Stanforth were told her breathing tube would be removed.

She was transferred from the Queen Medical Center in Nottingham to a hospice where she died early on Monday morning.

Her heartbroken father Dean said: ‘Indi’s life ended at 1.45am. My wife Clare and I are angry, heartbroken and ashamed.

‘The NHS and the courts have not only deprived her of the chance to live a longer life, but they have also deprived her of her dignity to die in the family home where she belonged.

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

Indi pictured at her baptism with her parents Claire Staniforth and Dean Gregory

Indi pictured at her baptism with her parents Claire Staniforth and Dean Gregory

Baby Indi Gregory with her mother Claire Staniford.  The baby has since died after her life support was turned off

Baby Indi Gregory with her mother Claire Staniford. The baby has since died after her life support was turned off

“They succeeded in taking Indi’s body and dignity, but they will never be able to take her soul.

“I knew she was special from the day she was born. They tried to get rid of her without anyone knowing, except Clare and I made sure she would be remembered forever.”

The heartbroken parents failed to convince judges of the High Court and Court of Appeal in London and judges of the European Court of Human Rights in Strasbourg, France, to keep her on life support machines and allow her transferred to a Vatican children’s hospital in Rome.

High Court judge Justice Peel had ruled that restricting treatment would be lawful and would be in Indi’s best interests.

Indi, born on February 24, suffered from a rare, incurable and degenerative mitochondrial disease, which caused her cells to not produce enough energy.

Doctors at the Queen’s Medical Center in Nottingham said Indi was in significant pain and anxiety and that further treatment was futile.

After hearing that doctors had taken action to withdraw Indi’s life support, Italian Prime Minister Giorgia Meloni sensationally granted the girl Italian citizenship last Monday, with the Bambino Gesu children’s hospital in Rome offering treatment.

But her anguished parents lost their battle against medics when a High Court judge ruled on Wednesday that Indi’s life support at the hospital should be switched off. She was transferred to a hospice on Saturday, where she later died early this morning.

As news spread of baby Indi’s death, Meloni tweeted today: ‘We did everything we could, everything possible. Unfortunately it wasn’t enough. Have a safe trip, little Indi.”

Italian Deputy Prime Minister Matteo Salvini said this morning: ‘Little Indi Gregory is no longer with us, news we never wanted to read. The Italian government took full advantage of her and offered to treat her in our country, unfortunately without success. A moving prayer for you and a sincere hug for her parents.’

Mr Justice Peel had ruled that a move to Italy would not be in India’s best interests.

Eight-month-old Indi (pictured with her father Dean), who suffered from an incurable genetic mitochondrial disease, had been involved in several cases in the High Court and the Court of Appeal

Eight-month-old Indi (pictured with her father Dean), who suffered from an incurable genetic mitochondrial disease, had been involved in several cases in the High Court and the Court of Appeal

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

In a last-ditch effort to prolong her life, Indi’s parents appealed the judge’s decision and thanked Meloni and the Italian hospital for their support.

“We believe it is in Indi’s best interest to come to Italy for treatment that can help her breathe by opening a valve through the implantation of a stent,” Dean Gregory told Italian media last week. “Then we can focus on her mitochondrial disease.

‘We know that Indi is a fighter, that she wants to live and that she does not deserve to die. Thank you’.

He added at the time: “My and Claire’s hearts go out to the Italian president and the Italian government, and the Italian people.

‘We thank you from the bottom of our hearts and we see you as Indi’s guardian angels. The compassion and love you have shown to help our daughter get the care she needs, and the dedication you have for Indi, make us so happy.

‘But there is still an urgency to appeal to the British government to allow Indi to come to Italy before it is too late.

‘As a father, I have never asked or begged for anything in my life, but I am now pleading with the British Government to please help prevent our daughter’s life from being taken.’

Meloni, meanwhile, said last week that she would do everything possible to defend Indi’s life and “defend her mother and father’s right to do everything they can for her.”

Indi's parents had lost the legal battle in London to continue their baby's treatment.  The eight-month-old baby has since died after her life support was withdrawn

Indi’s parents had lost the legal battle in London to continue their baby’s treatment. The eight-month-old baby has since died after her life support was withdrawn

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

Baby Indi Gregory, who was at the center of a legal dispute over her treatment, has died after her breathing tube was removed

Indi suffered from a rare, incurable and degenerative mitochondrial disease, which caused her cells to not produce enough energy

Indi suffered from a rare, incurable and degenerative mitochondrial disease, which caused her cells to not produce enough energy

Indi’s parents argued that they should be able to take their daughter home to provide palliative care – or take her to Italy for further treatment.

But judges at the Court of Appeal in London backed the High Court’s decision, arguing that a move to Italy would not be in India’s best interests.

On Saturday, Pope Francis released a statement supporting the family, saying he prayed for Indi and all children suffering from war and disease.

He said: ‘Pope Francis embraces the family of little Indi Gregory, her father and mother, prays for them and for her, and in the same hours turns his thoughts to all the children around the world who are in pain or risking their lives. because of disease and war.’

Indi was transferred from a hospital in Nottingham to a hospice on Saturday, where she was taken off life support and died in the early hours of Monday morning.

Mitochondrial disease: Rare genetic condition that causes cells to fail to produce enough energy

When a person has mitochondrial disease, the mitochondria in the cells do not produce enough energy for the cell. Sometimes they don’t work at all, and sometimes they’re just not very efficient.

If a cell does not receive enough energy (ATP), it cannot function properly.

There is a wide variety in the symptoms and severity of mitochondrial diseases. It depends on how many cells are affected and where they are in the body. So every person with mitochondrial disease is affected differently.

Each affected individual will have a different combination of mitochondria that work and don’t work in each cell.

However, there are times when certain body systems are affected in a recognizable pattern and these have specific names, for example Alpers, Leigh’s disease, MELAS and MERRF.

The parts of the body that are most affected are those that have the highest energy needs; brain, muscles, liver, heart and kidneys.

If many of the body’s mitochondria are affected in major body organs, such as the brain, mitochondrial disease can be very serious.

The symptoms of mitochondrial disease are usually progressive in body systems where cells have a high demand for energy, such as brain cells.

Source: Lelie Foundation