Nathan was born on the 28th October 2000 and from the start it was known that something was not right. He was sent to Ireland’s top Childrens Hospital for tests where, after sending a muscle biopsy off for testing, we found out he had Myotubular Myopathy. After spending nearly three wonderful weeks with our first born son Nathan passed away in my arms on November 14th.

Shortly afterwards I too decided to take the plunge and have a muscle biopsy, as I realised I was not in the same league as all my other friends when it came to normal everyday things like running ,climbing stairs and things like that. My muscle biopsy came back positve, in other words, that I too have Myotubular Myopathy.

In October 2004 our second son Sean was born. We had known a few weeks before he was born that he had a high chance of having the same condition as Nathan and I, and he did. He was quite strong though and lived thirty one wonderful days.

Then I found out I was pregnant again in 2008 and all my scans showed up fine, until early Christmas Day morning when my third baby Alex decided to make an appearance into this world – but he only lived for 20 minutes. What a gorgeous boy I had for only a few moments; with the most shockingly beautiful red hair! It took us 2 weeks to find out that Alex too had Myotubular Myopathy.

Nathan alex