Catching the slightest cold could put Jacob O’Neill in hospital for three weeks. He suffers from Spinal Muscular Atrophy – a potentially deadly disease that causes so much muscle weakness he could end up unable to swallow. In more severe cases, Spinal Muscular Atrophy (SMA) can be fatal. Campaigners believe that a drug called Spinraza has the potential to save the lives of children with the disease and give them back the quality of life that the condition has stolen from them. But the National Institute for Health and Care Excellence (NICE) disagrees and earlier this month issued draft guidance saying that it did not recommend the drug for routine use on the NHS due to ‘uncertainties over its long-term effectiveness and its extremely high cost’. Next month, the NICE headquarters in Manchester will be the scene of protest – as families and supporters come together to voice their opposition to a decision. SMA affects the nerves in the spinal cord which control movement, causing muscle weakness, progressive loss of movement, and difficulty breathing and swallowing. Those with the most severe form usually die before the age of two. Jacob O’Neill from Offerton, Stockport , was 18-months-old when he was… Read full this story
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