‘Sophie Basma (“Sophie”) is 10. She suffers from Type 3 Spinal Muscular Atrophy (“SMA”). SMA is a rare, genetic, neuromuscular disease which progressively leads to sufferers being unable to walk or sit unaided with devastating consequences on their quality of life. Sophie can no longer walk. There is medication for SMA sufferers which would have had the potential of helping Sophie regain her ability to work. But the NHS Trust had concluded that Sophie did not meet the eligibility criteria for this new medication, “Nusinersen”.’
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UK Human Rights Blog, 4th March 2021
Source: ukhumanrightsblog.com