So Gregory she died last night. She told LaPresse Dean Gregoryfather of the 8-month-old girl who suffers from a serious mitochondrial pathology, to whom the Meloni government granted citizenship on November 6 to allow her to be transferred to Baby Jesus of Rome. Little Ella suffered from an incurable mitochondrial syndrome that leaves no hope and the Roman hospital had offered to take her in to receive palliative care after her death. A trip considered useless by the medical advisors of the English magistrates who had diagnosed the little girl when she was just a few days old.
Despite the long legal battle waged by the parents, on Friday the UK courts ordered the cessation of life-saving treatments and the transfer to a hospice.
The father: “My life ended at 1:45”
“My daughter died, my life ended at 1:45 p.m.,” Dean says. After Indi’s death, “my wife Clare and I are angry, heartbroken and full of shame.” Dean Gregory, Indi’s father, told LaPresse. “The NHS and the courts not only took away the opportunity to live, they also took away the dignity of dying in her home. “They managed to take Indi’s body and dignity, but they can never take her soul,” Dean continued. “I knew she was special from the day she was born, they tried to get rid of her without anyone knowing, but Clare and “I made sure she was remembered forever,” Dean concluded.
The controversies
«Then Gregorio is dead. The English girl was murdered, “in her best interest”, by a health and legal system impregnated with a barbaric culture of euthanasia, which refused to even try the different clinical proposal of the Bambino Gesù Hospital in Rome, suffocating the love of its parents in the courts,” he wrote in “X” Pro Vita & Famiglia.
Meloni: “We did everything we could, it was not enough”
«We did everything we could, everything possible.
Salvini: “The Italian government has done everything possible”
«Little Indi Gregory is no longer here, news that we never wanted to read. The Italian government did everything possible and offered to treat her in our country, unfortunately without success. A moving prayer for her and a sincere hug for her parents. “This is what the deputy prime minister and leader of the League writes on social media: Matthew Salvini. “Father Dean’s words are shocking and make us reflect,” continues the Minister of Infrastructure. ‘My daughter died, my life ended at 1:45 am. The NHS and the courts not only took away the opportunity to live, they also took away the dignity of dying in her home. They managed to take her body and her dignity from Indi, but they will never be able to take her soul away. “I knew she was special from the day she was born, they tried to get rid of her without anyone knowing but Claire and I made sure she was remembered forever,” the post reads again, which includes the words of Claire’s father Then Gregorio.
mitochondrial disease
Indi Gregory’s disease is called combined D,L-2-hydroxyglutaric aciduria. “It is a very rare mitochondrial disease, for which there is currently no cure and with a limited life expectancy, even with supportive therapy,” explained geneticist Giuseppe Novelli, from the University of Rome Tor Vergata. It is a mitochondrial disease, in which the energy control units of the cells, the mitochondria, are affected, and it is “a complex disease – Novelli observes – in which the gene called SLC25A1, from which the little girl received two mutations”. copies”. In fact, the disease is transmitted if two copies of the mutated gene are inherited from both parents. In a healthy organism, the SLC25A1 gene “is a transporter gene, specialized in transporting citrate, essential for producing ATP”, that is , the chemical compound called adenosine triphosphate, which provides the cell with the energy it needs to function. If the gene does not work, the cells run out of energy.
Symptoms
It is a very rare disease, which in the past was known for other genetic causes, while the particularly rare form that Indi suffered from was not discovered until 2013. “It is – continued Novelli – a form of severe encephalopathy with epilepsy, which Very few cases are known.” It is a progressive disease, which in the most serious cases manifests itself from birth with epileptic seizures, respiratory failure, developmental delay and malformations, such as those that prevent the formation of the corpus callosum that connects the two hemispheres of the brain or the formation of the optic nerve. In milder cases it causes weakness of the muscles, especially in the arms and legs.
Experimental therapies
“Currently it is a fatal disease and in the future a possible solution could be gene therapy,” Novelli observed. “The first tests on a similar disease are underway, but – she concluded – we are at an experimental level and the road is still long.”
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in Il Mattino
