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When the Human Genome Project (HGP) released its initial draft sequence in 2001, President Bill Clinton hailed it as “the most wondrous map ever produced by mankind.” After more than ten years of work, an estimated $3 billion in research costs, and a “genome war” with Craig Venter’s private company, Celera Genomics, the project had produced a nearly complete sequence of a human genome.1
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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.