November 15th 2024.
Ayden Braqi, a one-year-old boy, tragically passed away at Great Ormond Street Hospital on Thursday. He had been suffering from a severe and irreversible neuromuscular disease that had no known cure. His devoted family was by his side when he took his last breath, shortly after the decision was made to withdraw the mechanical ventilation that had been keeping him alive.
During the High Court hearing in October, it was revealed that Ayden's condition was progressive and would only continue to worsen. Despite this, it was also noted that he was cognitively intact and able to experience the world around him through his senses. The hospital brought forth a request for his treatment to be stopped, arguing that the burdens of his condition outweighed the limited benefits he could derive from prolonging his life. Ayden's mother, Neriman Braqi, opposed this, believing that her son could still receive care and find joy in life, despite his illness.
The judge, Mrs Justice Morgan, took into consideration both sides before making her ruling. In her statement, she acknowledged the love and devotion Neriman had for her son, stating that she loves Ayden "with a devotion which is hard to put into words." However, the judge also had to consider Ayden's best interests from his own perspective and in terms of his overall welfare. After careful consideration, she concluded that the burdens of his illness and the treatments to keep him alive far outweighed any potential benefits. Therefore, she ruled that it was lawful and in Ayden's best interests for the mechanical ventilation to be withdrawn and for him to receive palliative care to ensure he experienced the least distress and retained his dignity until his passing.
Ayden had been admitted to Great Ormond Street Hospital at just three months old and had remained there for the remainder of his life. During this time, his mother would spend up to 16 hours a day with him, showing her unwavering love and commitment to his care. Despite her wishes for Ayden to continue receiving all available treatments, the judge noted that the severity of his condition and the rarity of his disorder made it impossible for him to benefit from any further medical intervention. The hospital's legal representation also argued that any further treatment would be futile, as Ayden's prognosis was very poor and his condition made it difficult for him to experience any significant benefits from continued life.
In her ruling, Mrs Justice Morgan emphasized the sadness of Ayden's case but ultimately concluded that it was not in his best interests to continue bearing the burdens of his illness and the intensive care treatments. She also commended Neriman for her tireless efforts to fight for her son and expressed her belief that she could not have done any more for him than she had.
A spokesperson for Great Ormond Street Hospital expressed their sorrow for Ayden's family and acknowledged the difficult decision that had to be made. They reiterated that the staff always have the best interests of the children at heart and that going to court is a last resort when all other options have been exhausted. They also stated that their teams had developed a close relationship with Ayden and his family during his time at the hospital and that they would continue to support them in any way possible.
In the end, the judge's ruling was made with Ayden's best interests in mind, as well as the beliefs and wishes of his family. It was a heartbreaking and difficult situation for everyone involved, and the hospital expressed their sympathy for the family's loss. They will continue to provide the best care for their patients, always keeping their well-being at the forefront of their decision-making.
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