beyondtheroundabout

Forum role	Member since	Last activity	Topics created	Replies created
Member	Nov 12, 2016 (8 years)	-	0	1

Forum role: Member
Member since: Nov 12, 2016 (8 years)
Last activity: -
Topics created: 0
Replies created: 1

Bio

I'm Claire, I'm married to Ralph. We had our beautiful Phoebe later in life at 40 and 50 respectively. Parenthood was a revelation for both of us and she was our world. Phoebe was diagnosed with a rare genetic mutation called LPIN1 aged just 2 following an episode of what turned out to be something called Rhabdomyolysis, literally melting of the skeletal muscle. 3 further episodes followed, the last of which tragically took her life. Since her passing I've raised money for a new roundabout in the park behind our house, but I know this is just the start of our journey without her. Losing your child, your only child is a terrible thing and I've been told one I'll never get over, but I need to look for hope and hope others who have suffered loss may gain something from sharing my journey