On our 5th Day of Christmas, we remember a very special boy called Alex.

Our Alex was diagnosed with adrenoleukodystrophy (ALD) just after Christmas 2001, when he was 7, and I think the doctors knew before but wanted us to have that last Christmas without the pain they knew was coming.

Our Christmases after diagnosis were always difficult, knowing Alex should have been opening gifts containing the latest kid’s toys and games. We don’t even know if he knew it was Christmas, but I like to think he did. Having his little brother Ayden around to provide that festive child’s wonder and joy was a welcome tonic.

We lost Alex on 19^th December 2012 and with Ayden now an adult, we’ve agreed that we no longer need to celebrate Christmas, except to make sure we spend the day together and remember happier times.