Blog by Laura Ellis
Laura is a dedicated supporter of CMV Action and a passionate advocate for raising awareness of congenital CMV. Laura’s daughter (her second child) was diagnosed with cCMV at 4 years old. Since then, Laura has been a strong advocate and supporter of CMV Action, regularly speaking out to ensure other families don’t go through the same experience without the knowledge and support they need.
Recently, Laura shared her story on BBC One daytime programme Con or Cure, helping to shine a light on CMV for a national audience. In this blog, Laura reflects on why speaking out matters, the power of shared stories, and the strength of community in driving change.
Why I Speak Out: The Importance of Advocacy and Community
I’m really passionate about speaking out about CMV because I wish I had heard more about it before our daughter was diagnosed. I felt so helpless that her life had been impacted by something I knew nothing about.
If just one person hears about CMV and thinks, “I wonder if it could be CMV?” or, “Perhaps I should read about how to protect myself,” then I feel like it’s worthwhile to keep talking about our experience.
I have worked in charities and know the positive impact case studies can have on sharing stories it’s such a powerful way to raise awareness.
The Power of Shared Stories
When people hear about a virus, they immediately get catapulted back to the pandemic and think about contagiousness. There’s a lot of stigma about viruses. Talking about CMV and getting knowledge out there can only do good – to break the stigma and help people understand more.
Raising awareness of stories like ours, where we had a delayed diagnosis and hadn’t heard of CMV until our daughter was diagnosed as single-sided deaf at four years old, is really important. It shows that there is work to be done to help healthcare professionals. We’ve always wanted to raise awareness in a way which doesn’t criticise healthcare professionals, it just puts CMV in their mind for the next patient who might present with symptoms that could be CMV.
Our Experience with the BBC
Our experience with the BBC was lovely from start to finish. Every single person we encountered throughout the whole process was kind, professional, empathetic, and understood our wish to keep our daughter anonymous. They were thorough in their research, and when the crew came to our house, they were polite, kind to the children, and very caring to me when I got upset talking about some of our experiences.
We filmed back in the summer of 2024, and the show aired in spring 2025, so it was a long (and slightly nerve-wracking!) time to wait to see what they edited in and out. But when it aired, we were proud to have raised awareness and I got lots of lovely feedback about it. Of course, some of 
what we filmed was edited out, but as a starter-for-ten, it felt like a good piece of awareness-raising for CMV on a really high-profile TV channel.
Stronger Together
In some ways, having a child who has been impacted by CMV is like joining a club you never asked to be part of. But being part of a community of people who have experienced a similar journey to us makes us realise we aren’t alone, we were right to fight for our daughter’s diagnosis, and we feel proud to now support CMV Action in the work they’re doing to raise awareness.
We’ve also contributed to research studies to try and help in any way we can. It’s scary thinking about sharing your journey in case people judge, but I think back to myself holding my tiny, poorly baby and think if I’d heard about CMV at that point, or if one of the many, many health professionals we encountered had had training in CMV, maybe the course of things might have been different.
If I could give the gift of that knowledge to another family by sharing our experience now, then it’s definitely worth being brave for. The more voices that speak up about CMV, the better.