Nathaniel was born in March 2008; he didn’t breath and looked floppy when he was delivered and had to be resuscitated. We first saw him in intensive care and instantly realised that things were serious. A nurse, when asked whether Nathaniel would live, replied “it’s 50/50.” and we felt like our hearts had been torn out. Following a hospital transfer, several tests, which came back normal, were carried out; we convinced ourselves that whatever Nathaniel had couldn’t be that bad. At 13 days old a muscle biopsy revealed that Nathaniel had Myotubular Myopathy. Two days later doctors asked if we wanted the ventilator turning off – we didn’t, we wanted Nathaniel to live – and we look at him now and can’t believe that someone once considered his life so worthless. Just days later he failed to come round from the anaesthetic after a tracheotomy operation. Yet Nathanial fought through and finally woke up. Nathaniel moved into a new hospital which was much more familiar with the condition and where he was cared for wonderfully.

Nathaniel passed away very suddenly in March 2009, shortly before his first birthday, as a result of complications arising from his condition. We miss him and grieve for him every day and hope he is at peace.