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“Girl with Kabuki Syndrome Denied Wheelchair by NHS”

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A young girl, Orla, initially cleared by medical professionals, is now facing challenges with mobility and has been denied a special wheelchair by the NHS. Orla’s mother, Faye Errington, expressed frustration over what she described as repeated misdiagnoses by doctors since Orla’s birth. Orla was born with multiple health issues, including three heart defects, one kidney, and hip abnormalities. Her health complications have persisted, leading to breathing difficulties and dependency on respiratory therapy.

Orla also copes with Kabuki Syndrome, causing severe joint problems that make walking painful for her. Despite her condition, the NHS rejected Orla’s wheelchair application, prompting her mother to launch a fundraising campaign for a powered wheelchair. Faye emphasized the urgent need for proper medical attention, believing that early intervention could have prevented Orla’s current struggles.

The journey to diagnosis has been marked by missed signals, with Faye recalling instances where her concerns about Orla’s legs were dismissed. It was only after persistent advocacy that Orla’s dislocated kneecaps were identified, following a series of falls. Faye highlighted the emotional toll on Orla, who has undergone numerous surgeries and faces mental health challenges. Orla’s educational progress has been hampered, keeping her away from school for an extended period.

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