Case Studies

     
Julia’s son Ben was born with congenital CMV. Now 26, he lives in supported housing.  When Ben was born he was surrounded by doctors, so alarm bells immediately started ringing. The doctors didn’t really know what they were dealing with. They didn’t test for CMV, and information on CMV at the hospital was at least 20 years old. The only...
Stephanie Whitelock has a two-year-old son born with congenital CMV. The family have had to pay for additional expensive therapies not available on the NHS.  Stephanie said: “As a result of my son Gabe's CMV, we face additional costs between £250 - 300 every month. The costs really do mount up. Yearly we have to find between £3,000 - £3,...
Rebecca’s eldest son Emran, 6 was born with congenital CMV, but was not diagnosed until his third birthday. “It soon became apparent Emran was not meeting his milestones. Every time I asked a health professional I was palmed off and told everything was okay. I knew it wasn’t. He would just sit and stare – something most definitely wasn’t right...
Gaye first realised something was wrong when her son Calum failed his newborn hearing test. Gaye is having to fight to get Calum the educational support he needs and has self-funded private assessments costing over £3,000. “Following Calum’s diagnosis, we soon came to experience the stark lack of knowledge professionals had about CMV. At 15...
Alyson was told her ten month old daughter has cCMV. Ellie is now 12. Alyson is angry that it looks like very little has changed.  “From around six months we knew something wasn’t right with Ellie. Eventually we were able to see a paediatrician who tested for CMV, alongside a number of genetic tests. Ellie’s heel prick test showed up...
My fellow GPs need to take action now. GP Christine Wheatley, wants GPs to take action now to help reduce the numbers of babies born with devastating conditions by giving some simple routine advice to pregnant women. Driven by own personal experience, Christine wants her colleagues to know how one simple recommendation could save the NHS...
Amy’s second baby, William died from an infection of CMV. Amy talks about the personal cost of CMV and the impact it has had on her family.  “Our baby was due on Christmas Day. We were so excited. I’d previously had a successful pregnancy with our first son Dylan and had no reason to think this would be anything different. Our optimism...
Richard’s wife was expecting their third child. They found out during the 20 week scan something was wrong. Richard’s baby Annie sadly died soon after birth. “My wife and I were expecting our third child. Everything was good until we had the 20-week scan, where we were told the baby was measuring smaller than it should. A few weeks later, my...
Lynda’s daughter looked perfectly healthy when she was born. Six months later Lynda noticed she wasn’t using her hands. “When Imogen was six months I noticed she wasn’t using her hands and would occasionally arch her back. The health visitor thought it may be caused by infantile spasm and advised us to get it investigated. Imogen had an MRI...
     

Our Stories

Joshua_newborn_CMV
2001 When our youngest son was born in 2001, apart from a little jaundice he seemed 'normal'. It was only as time passed and developmental milestones were not reached, that concerns... Read more
From day 1 to 15 months old. My girl Violet.   Born on the leap year 29th February, full term at 39 weeks, weighing 5lbs7oz. Severely to profoundly deaf. Now weighing... well, I... Read more

Latest Events

Registered charity no: 1171773