"It's perfect," she writes in her research diary. "Just us and food. What more could I want?"
Tilly has Dravet Syndrome, a rare genetic epilepsy which causes seizures that could kill her. Their request to Birmingham Children's Trust for respite was refused with the trust suggesting training grandparents to help, even though the family had told them that was not possible.
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It was not immediately clear what caused the crash, but some witnesses said the weather at the time was treacherous.