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 positive for CMV. We finally had our answer to why she wasn’t developing as she should. Up until that point we had never heard of CMV. Receiving the diagnosis was naturally upsetting, but at the same time it was a relief to know what Ellie had.
“Immediately we started seeing the physiotherapist, speech and language therapists, alongside hearing and eye specialists, to help with Ellie’s development. The costs involved in providing care for Ellie have been extensive. The service we received from the NHS was great.
“It took a few years before I got to understand CMV properly. I remember at the time being told that now I have caught CMV, this could never happen again. I since learnt that there are many different strains of CMV, and, if you catch a different strain once again when pregnant, there can be serious consequences for the baby. It was only after reading about it I realised so much more could be done in terms of prevention and awareness.
“Ellie is now 12 and whilst she is generally well she has many serious consequences as a result of CMV. Ellie is severely disabled. She is tube fed, can’t talk, sit or stand by herself and needs help with everything. She has a few issues with her physical development and will soon be undergoing major surgery to have her curved spine corrected.
“With Ellie’s condition she sees a lot of specialists. She is fortunate she goes to a wonderful special school, with all the health specialists she needs onsite, including OTs, nurses, speech and language therapists and physiotherapists. The school (Perseid School in Morden) is an amazing place and meets all of her needs. This makes a huge difference. Ellie loves it there and has many friends. I can only assume that a school like this doesn’t come cheap, but as a state school, the Local Authority meets these costs.
“Equipment for Ellie is also costly and she is now on her fourth wheelchair. The seat is being specially produced to fit Ellie, so I would imagine a bespoke service like that is very expensive.
“Ellie also receives benefits including Disability Living Allowance and direct payments. What’s provided never quite covers the cost. We have had to make alterations to our house, including through floor lifts and hoists. Some of this has been funded by the Local Authority but we have had to pay extra to make it suitable for our home. With having a disabled child everything costs more, including requiring a wheelchair accessible car.
“When we were first told about Ellies diagnosis we were told it was a really unfortunate thing to happen. At the time that explanation was enough but now, as I learn more about CMV, I feel cross. The thought that exactly the same thing is happening today, as what happened to Ellie 12 years ago is really disappointing. I am outraged it is not more commonly known about.
“Children could potentially be saved from this if there was more preventative advice given. But, apart from CMV Action, there is no drive to move it up the agenda. It is crazy when you think of the costs savings it would make if less children were affected.”