and with the words 'It's bad news', our lives as we knew them, completely crumbled. The condition is one that even the consultant had never heard of, and our geneticist had known of it, but never cared for anyone with it. MeCP2 Duplication Syndrome is what Blake has been diagnosed with. We were told that day that it would affect him 'globally'. It was all too much to take in at the time, and we left the hospital dazed, confused, terrified. We have since learned so much more about this dreadful condition, and the more we learn, the worse it becomes! There is no light at the end of this tunnel.
The pain we felt then, and still do, and probably always will, is indescribable. Immediately, we grieved for the son we thought we were having, the dreams we had for our little boy, shattered, Paul’s dreams of playing football with his son, destroyed. We are now facing an entirely different future, a lot of it unknown, but what we do know is not good. Our pain was tangible, our loss so strong that we didn’t know how we could ever pick ourselves up. This kind of news is something that no parent should ever hear, yet here we were, after having one healthy little girl, and a healthy pregnancy, with no indication whatsoever that there was anything wrong, with the worst possible news ever. We struggled through each day, and we still do. Some days are better than others, but we carry this huge sadness with us everywhere, it never leaves and we never forget it. I can honestly say that not a minute goes by where I don’t think about it. I even dream about it. We have no escape from it, and more importantly, neither does Blake. He is such a handsome little boy, who is so dearly loved by so many, and we find it so difficult to believe that this perfectly formed little boy has such a dreadful, cruel sentence.