We are joined in studio this afternoon by Niall McHugh and Stephen Lannen – Niall is the dad of five month old Lara and Stephens daughter is Nelly who is 22 months. Both little girls have SMA1- which is spinal muscular atrophy type one – a fatal genetic muscle wasting disorder.

Both Niall and Stephen are here as they are campaigning to get access to a wonder drug called Spinraza which would save the life of their daughters.

If you would like to know more about Lara and Nellys battle click here for there Facebook