Claudia tells us what it was like to do her first talk to professionals at an event on the 100,000 Genomes Project hosted by Southern Health in partnership with Wessex Genomic Medicine Centre.
I am going through the induction process to join the SWAN UK team as a Parent Rep for Hampshire and I responded to a Facebook request on the SWAN UK Parent Rep Facebook group.
No, never ... which made it interesting. It was my first activity as a soon-tob-be Parent Rep, but certainly won’t be the last.
I wanted to share my story, remind the doctors and researchers that we appreciate all the work they do but also remind them to remember the patient behind the research.
It was a lot easier than I thought. I wasn't teaching them anything, but simply telling my story as a mum of a special needs, undiagnosed child.
Yes, I would love to be involved in doing more of these talks. I think it is important that we, as parents of an undiagnosed child, work closely with the doctors and researchers to bridge the gap between the medical side and family.
The truth of what it is like with a child that is undiagnosed – the hardships and the worry. I hope I have given them an understanding of what life is like in limbo in the hope that when they go back to their practices, hospitals or clinics they can think of a way to touch base with families like mine and make sure they have the contact details to pass on for SWAN UK.
I am very lucky to have my mum living nearby and I can trust her completely to watch my children as she understands Trent.
Just tell your story. No one else in the world can tell it better than you.
It is comforting to know that there is an organisation with others like me, that understand the lows as well as the highs of raising a child with an undiagnosed genetic condition. There is always someone to listen and completely understand where you are coming from. Not long after joining, SWAN UK sent Trent a beautiful bunch of balloons and a card that I still carry around with me – a card written not to me, but to Trent saying ‘just a little something to let you know that all your friends at SWAN UK think you are brilliant.’