The parents of two young babies with a rare terminal condition are seeking access to a new potentially life saving drug.

Stephen Lannon and Niall McHugh are parents to Nellie and Lara, the only children in Ireland with Spinal Muscular Atrophy type 1 - a rare genetic condition that causes muscle wasting and issues with breathing swallowing and movement.

For the majority of children with SMA 1, life expectancy is less than 18 months.

Spinraza also known as Nusinersan is a new drug to treat SMA 1 and has also been successful in reversing it. The Manufacturers Biogen have applied to the European Medicines Association for market approval, however both families are hoping it will be made available to them sooner on a compassionate basis.

Stephen Lannon has set up a petition for Spinraza to be approved immediately.

Kim Buckley has this report: