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.
“We got a new paediatrician who, at the first appointment, ordered an MRI. He told us it was likely to be one of two things – either brain damage from birth or an infection. Soon came the diagnosis of CMV. CMV damaged Emran in three ways – he has epilepsy, global development delay, sight and hearing loss.
“For three weeks during my pregnancy I was really ill with the flu and they think that is when I passed CMV to him. We broke down upon hearing the diagnosis. We desperately didn’t want it to be true. We cried for ages. At the same time, we were also relieved because we finally knew what was wrong.
“Emran has speech and language therapy and physiotherapy every two weeks. He has seen the OT and also sees the podiatrist. He has had a number of paediatric appointments, several ECGs, and is on two medicines for his epilepsy.
“I had to quit work. Financially it was hard. To help with finances we have had to move to a cheaper area two hours away from family.
“Health professionals appear in the dark about CMV too. I am currently pregnant and when I speak to midwives about CMV they have no idea.”