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This is Wren's story:
Wren is Erika's niece and this is the story of how her sister Anna and her family have been affected by CMV.
CMV has turned our lives upside down. Our family calendar is stuffed with appointments, therapy and visits from professionals. Our home is full of specialist equipment and a ramp leads up to our front door. Our fridge and cupboards are overflowing with high calorie food. My brow has become furrowed but my arms are now toned to perfection!
All this because of a tiny, common and almost asymptomatic virus which struck me and my unborn child early in pregnancy. While I had a niggling doubt that something was amiss, I had no idea that cytomegalovirus was adversely affecting the development of our baby’s nervous system. When Wren was born the only indication was a bloom of tiny purple spots on her crinkly little face. She later failed her new born hearing test and, as a result, was subject to further investigations which revealed the culprit to be CMV.
The early days were tough with frantic internet searches and endless appointments. I woke daily with the words ‘congenital cytomegalovirus’ rolling over and over in my mind. Wren underwent antiviral treatment and we consoled ourselves with the statistics: most children with CMV will be OK.
As the months went by and her development started to stall we realised we were among the unlucky few. Wren was diagnosed with cerebral palsy as a result of congenital CMV. We endured the saddest of times, holding things together, keeping everyone fed and educated and clean, unable to contemplate the future or picture who our girl might become.
Wren is five now. She needs help to sit, stand, walk, eat, drink, toilet. She uses a computer to communicate alongside Makaton signing. She has a huge team of professionals to help with every aspect of her condition and a busy schedule of therapy and school. She loves to spend time with her siblings and friends. She understands everything people say and has a great sense of humour, playing tricks and teasing us at any opportunity.
Our wonderful girl faces so many hurdles due to CMV, as do many children in the UK. It need not be this way. CMV Action are dedicated to increasing awareness, promoting simple measures to avoid infection during pregnancy and developing a vaccine. The money we raise will hopefully prevent other children facing similar challenges to those Wren endures.
Please support us in any way you can; a donation of any size, a share or a mention to a friend, or come and cheer us on the day.