A Castlebar woman says she’s devastated and angry at the decision by the HSE not to fund a life-changing drug for children with Duchenne Muscular Dystrophy.

The drug – Translarna – is specifically for children whose condition is caused by a particular genetic defect, and who are aged 5 years or older and still able to walk.

The drug is only suitable for 5 boys in Ireland at present, and would slow down the progress of the condition.

However, the HSE has decided not to fund the drug – which is being provided in 22 other European countries.

Anne-Marie Harte Walsh from Castlebar is mother of 5-year old Lewis, for whom Translara is the only treatment option.

She told Midwest Radio today that she’s devastated and disgusted at the HSE’s decision not to fund this drug.

Meanwhile, a Mayo-based Senator has called for a more patient-focused approach from the HSE when considering new drugs  - in light of the HSE’s decision not to fund Translarna for children with Duchenne Muscular Dystrophy.

Mayo Sinn Fein Senator Rose Conway-Walsh says it’s vital that those affected by this condition are placed at the heart of negotiations between the HSE and the pharmaceutical company.

She also believes there should be more co-operation among EU states to secure better deals on drugs such as Tranlarna.