Families appeal for vital drug therapy

The weakening and wasting of his muscles will not stop five-year-old Harry Bulman travelling almost 500km by minibus today to join a protest calling on the State to fund a potentially life-changing therapy.

Harry, who has spinal muscular atrophy (SMA), a rare neuromuscular disorder, will travel with family and friends from Youghal, Co Cork, to Leinster House, where parents of the 25 or so children in Ireland affected by SMA will plea for access to Spinraza, the first drug approved for treating the disorder.