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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Author(s): Oliver A. Dicks, Solveig S. Aamlid, Alannah M. Hallas, Joerg Rottler