The first post

I am mum to the most special and beautiful boy in the world, Samuel Luke, who was born on 10 Nov 2010. He is the most beautiful baby I’ve seen in my whole life. He has the most amazing blue eyes and the most riduclously long eyelashes any woman would be proud of. My son has an extremely rare genetic disorder called ARX which causes severe epilepsy. Sam spent the first two months of his life in Neonatal Intensive Care, cared for by the amazing doctors and nurses who we owe so much to. He continues to have seizures every day but they are much better than what they were. He is still very much a baby baby, but boy, he does love his cuddles. That’s when you know he is happy when he is having a good long cuddle.Because of his condition, we know that we may not have him for anywhere near as long as we should, that is why we celebrate every day with him. Every day is a beautiful miracle.But if you held him, he may not look at you, but you would feel how much he likes to be cuddled and you would come away realising how much you enjoy cuddles too and perhaps even how much you needed that warmth at that moment.He is our boy Sam. xx

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