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Available for over a year

After months of uncertainty, health bosses have revealed those already taking or soon to start treatment for the condition could continue to have it beyond the end of May. The drug Brineura is the only approved treatment that slows down the condition's progress that causes a rapid decline in a child's ability to walk, talk and see. Flory's mum, told ÃÛÑ¿´«Ã½ CWR's Marian McNamee what it means to have the decision.