A Sixmilebridge mother, whose son suffers from a degenerative muscle disease says approval of a pioneering drug will change their lives.
12-year-old Jordan Perez suffers from spinal muscular atrophy, which sees progressive muscle deterioration over time.
His family have already been to the gates of the Dáil campaigning for access to the drug Spinraza and this time last year, the Government approved the rollout of the treatment.
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But the Perez family is still waiting for access to the drug and the matter has now been raised with the Health Minister Stephen Donnelly, by Clare’s Sinn Féin TD Violet Anne Wynne.
Jordan’s Mother Sinead says his condition has gotten worse over the past year.
