I’m not sure I can find the words to explain how I am feeling, overwhelmed, devastated, blessed and hopeful they all play a part in the symphony of emotions in my heart.
Last night I had the honour of attending a Gala evening for the Rett Syndrome Research Trust UK. Outstanding doesn’t come close to describing the event! All the dedicated trustee’s and organisers should today be resting in the knowledge of the great evening they hosted.
I cannot tell you how close I came turning round and coming home yesterday. To be perfectly honest I wasn’t sure I had the strength or courage to face an evening discussing the very condition which had taken my beautiful daughter Livvy from me. Yet as I took the first few steps through the door I was engulfed by amazing support and care. Thank you all for your kindness.
There were so many parts of the evening which were memorable. Mark Owen from ‘Take That’ was there, of course me being me hadn’t a clue who he was as he was standing right beside me, yet I should have guessed he was someone special from the amount of ogling going on. Though on a serious note a big thank you to Mark and his fellow band members! They set the auction off to an amazing start with their kind donation of tickets to their forthcoming Wembley gig.
There were two speeches last night which really took hold of my heart. Rachael Bloom one of the co-founders and trustees of RSRTUK spoke about her reasons to fight for the cure. As she described her beautiful daughter Amber I could see, could feel Livvy in her words. Rachael you are an amazing woman and I am so glad I had the opportunity to meet you.
Second was the speech from Professor Adrian Bird. This gentleman is the world’s leading expert in the gene; MECP2 which is responsible for Rett Syndrome. He spoke about the hope, the chance that Rett Syndrome may be reversed. Imagine in my lifetime there may be a cure for this devastating condition how amazing is that! Listening to his words I was filled with more determination that ever to do whatever I can to help make this happen.
Last night will be one I remember for a long time. For me personally it was a major step forward in my emotional well-being. Today I am completely exhausted but exhilarated. For Rett Syndrome Research Trust I am sure it will be the first of many successful ventures.
Thank you all for the kindness you showed me and for allowing me to share Livvy with you. You will never know how much that meant. To share my memories of my beautiful brave dearly missed daughter with you all.
I do pray for all your girls and hope to see you all again soon.