On February 24th, 2023, Claire Staniforth and Dean Gregory welcomed a beautiful child named Indi Gregory into their life. She was born with an extremely rare genetic condition known as Mitochondrial Disease. Unfortunately at 1:45 am GMT on November 13th she passed away at the Queen’s Medical Centre (QMC) in Nottingham while being held in the arms of her mother. However, her terminal illness isn’t the direct cause of death. Her death was mandated by the courts of the United Kingdom and is the latest end-of-life hearing to reach the Royal Courts of Justice. The ruling happened on November 8th by Justice Robert Peel. Similar cases of children being forced off life-support include Archie Battersbee, Alfie Evans, Isaiah Haastrup, Alta Fixsler, and Charlie Gard.
Mitochondrial Disease is an umbrella term for multiple kinds of mitochondrial disorders that lead to energy deficiency issues from dysfunctional mitochondria in the cells. The condition can be fatal depending on the type of mitochondrial disease, especially in cases of Leigh Syndrome. The severity of each case varies, as it can affect one part of the body or most of them. Depending on the circumstance of each individual affected by mitochondrial dysfunction, some can’t live beyond infancy or childhood while some make it to their 50s having a relatively normal life. There is limited research about the disease and awareness for those suffering is scarce.
Indi’s family received legal support from The Christian Legal Centre, which is linked to the organization known as Christian Concern. After several months of the legal battle, it wasn’t enough to convince judges of the High Court, Court of Appeal, and the European Court of Human Rights to allow Indie Gregory to receive care. There were even failed attempts to allow her to receive treatment in a hospital in Rome. Despite being offered emergency Italian citizenship by Giorgia Meloni, the Prime Minister of Italy, she wasn’t allowed to leave the UK. Being offered Italian government resources and support of the Vatican was dismissed by the British government, as it was ruled that she needed to be removed from her life support against the wishes of the parents after multiple appeals. The judges who refused the appeals of Indi’s parents include Senior UK judges Lady Justice Eleanor King, Lord Justice Peter Jackson, and Lord Justice Andrew Moylan. It was argued that the Vatican and the Italian government were “wholly misconceived” in trying to continue her medical care.
In her final days, Dean Gregory was able to get her baptized. He had the inspiration to get his daughter baptized by the Christian legal volunteers who fought to keep Indi alive. He stated “I am not religious and I am not baptized. But when I was in court, it felt like I had been dragged to hell.” It appears that this experience made him a believer, as he continued with “I thought, if hell exists then heaven must exist. It was like the devil was there. I thought if there’s a devil then God must exist.” Dean also expressed that a Christian volunteer would visit the ICU every day, and appreciated the dedication of the lawyers from the Christian Legal Centre. The lawyers who helped with Indi’s case voluntarily were Bruno Quintavalle, Pavel Stroilov, and Louis Browne KC.
To conclude it is necessary to mention that the writer of this article has Mitochondrial Disease, specifically with the diagnosis of Mitochondrial Cytopathy. Seeing an 8-month-old be forced to die because the United Kingdom’s universal healthcare program didn’t want her on life-support anymore has been devastating. We may have a terminal and progressive condition, but we have the right to fight for our lives. We are allowed to live as long as our disability will let us. Although the specific type of Mitochondrial Disease Indi Gregory had is unclear to the public, the case she and her family had to go through is an absolute tragedy as there was still a chance she could’ve lived a few more months if not years. The immense outrage is perfectly reasonable, and learning the UK courts do not seem to care about children with our disease who need intensive care is beyond evil.
To learn more and to help spread awareness of Mitochondrial Disease, please consider researching the subject and looking into organizations such as the Mitochondrial Disease Foundation, Cure Mito Foundation, The Lily Foundation, and Mito Action.