Sam was diagnosed in March this year with adrenoleukodystrophy (ALD). His condition has deteriorated rapidly since diagnosis, and he is now completely dependent.
Since March we have been making memories as all families do, but making sure we squeeze as much into our time as possible. This Christmas time will be full of family time, keeping some old traditions we have, and making new ones.
Sam and his Sister love Christmas. Obviously this Christmas will be different for Sam this year and that is hard for him, although with his infectious smile you would never know.
Sam being the eldest child would have been organising the presents and helping his little sister open them. This year the roles will be reversed and his sister will be helping him.
Sam will not be rushing into our room to tell us ‘he’s been’ or diving down stairs to see of Santa has left anything under the tree.
We are beyond sad that Sam is having to go through this ALD nightmare, but we will not let this stop us from having the most amazing Christmas with our family, and making it one to remember.