Thank you for visiting my blog. Every visit means more to me than you could ever know.
My name is Claire Casson.
My husband, Ralph and I met and had our beautiful Phoebe later in life. I was 40 and he was 50 when she arrived 17th December 2011. Parenthood was a revelation to us and transformed our lives for the better. She was the absolute centre of our world and grew into a confident, always happy, always had a question or an answer, full of life little girl.
Sadly our happiness was broken by periods of time in hospital, the first when Phoebe was 17 months old. The doctors spent days throwing everything at her and trying to identify what was wrong and eventually discovered that her ck ( creatine kinase) enzyme count was incredibly high at 250000 rather than the norm of around 100. Tests followed her discharge and months later we finally received a diagnosis, Phoebe had a genetic mutation called LPIN1.
LPIN1 is a very rare condition and relatively recently discovered so at that point we didn’t really understand the implications, these only became clear with further episodes of what actually turned out to be Rhabdomyolysis, melting of the skeletal muscle. Phoebe’s genetic mutation meant she was more vulnerable to simple fevers or fasting. We took extra care but wanted her to have a full, normal life. Her 4th episode of Rhabdomyolysis took a swift and more horrific turn, her potassium levels began to rise uncontrollably and we tragically lost our shining star, our gorgeous girl late in the evening of 17th September 2016. Our world was shattered into 1000 pieces.
In the days that followed her death, bouquet after bouquet arrived, it was too much for Ralph so they all ended up outside on the patio. I didn’t like the waste, the tragic waste of Phoebe’s short life aged 4 3/4 was beyond enough to cope with. I needed to find a more positive & more permanent direction for people to show how much they cared for us and felt the tragedy of Phoebe’s passing. My mind turned to fundraising and while research around LPIN1 is happening, my first impulse was to create a permanent memorial to Phoebe, one which would bring joy and laughter just like Phoebe brought joy into our lives. The roundabout in our local park had been broken and then removed and there were no signs of a replacement in a hurry. Phoebe would often ask me when there would be a new one and so with that memory I set about crowd funding for a new one. I raised almost £12000, plenty for a roundabout. The council were very receptive, the site was cleared and Phoebe’s roundabout was in place for the opening ceremony which took place on what would have been Phoebe’s fifth birthday on 17th December 2016.
But what then? The Roundabout had given me temporary focus but what next? What should I focus on and how could I learn to live without her? I was told repeatedly that you never get over the loss of a child and that you carry the pain forever .The road ahead was and remains daunting but as I grieve for Phoebe, I thought it might help me to share my journey in this blog. I write about my ups and downs, what I learn, think & do along the way. I have taken comfort from hearing about others experiences and journeys so maybe others will from mine. I know that everyone’s journey with grief is different, so nothing I write is ever meant to offend. Others having lost a child may feel that’s not like me or she’s so naive but it is helping me to write about how I feel and if I strike a chord with just one person then that’s a good thing. Claire Casson Edited 10/06/2017.