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.
How did you get involved in talking at this event?
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.
Have you ever done anything like this before?
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.
Why did you want to take part?
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.
How did you find talking about your personal experiences to an audience of professionals?
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.
Is this the kind of activity you want to do more of in your role as a Parent Rep?
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.
What do you think professionals got out of your talk?
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.
How easy is it to do things like this when you have an undiagnosed child?
I am very lucky to have my mum living nearby and I can trust her completely to watch my children as she understands Trent.
What advice would you give someone else who is thinking of doing something similar?
Just tell your story. No one else in the world can tell it better than you.
What does SWAN UK mean to 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.’