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Gracie Davies, a mother from Yorkshire, has shared her family’s journey after her three-year-old daughter, Juno, was diagnosed with a rare genetic condition. The condition, known as TRAPPC6B, affects only 18 people in the entire world. Gracie had to give up her career after Juno’s diagnosis, and the family has faced significant challenges in caring for their daughter.
Juno’s condition presents with developmental delays, intellectual disability, and a speech impairment. Gracie explained that their life with Juno is different from what they imagined, with limitations on typical family activities due to Juno’s needs. Despite the difficulties, Gracie remains positive and dedicated to providing the best care for her daughter.
The family discovered Juno’s condition when she was 10 months old and unable to sit up. Through genetic testing, they found that both Gracie and her husband carried a specific mutation that Juno inherited. This rare condition has only one other known case in Europe, in France, with whom the family has not been able to connect. Gracie has actively sought out other families with similar diagnoses, hoping to provide support and information.
Gracie had to let go of her career as a building surveyor to care for Juno full-time. Juno requires assistance with daily activities like walking, bathing, and navigating stairs. The family recently appeared on a BBC show to raise funds for Juno’s treatment. Gracie also received free laser eye surgery through a campaign for NHS workers and unpaid carers, providing her with a small but impactful improvement in her daily life
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