Michael Kevin CMV Fighter's fundraising page
On 31st March 2012, my second son, Mike was born. We knew straight away he was poorly and in no time he was whisked away to the Neonatal Unit, only to find out three days later that Mike had been born with Congenital CMV. I had never heard of this virus, yet all of a sudden I was being told that my baby was very likely to have been hurt by the virus, leaving him with lifelong disability. Before our consultant left the room, she handed Dad a bundle of information, provided by CMV Action.
At the time I couldn’t read the literature, I was in total shock but my big sister and my father in law read the stuff and rang the support line and spoke to Caroline (a trustee). She gave us tons of useful advice, support, a mobile number for me ‘if I wanted to talk’ and put us in a touch with another lovely family, who’d been in our shoes only a few weeks previous. In the midst of the diagnosis I remember finding real comfort in the fact that Caroline had been here before, yet things had somehow resumed to some kind of normality, so much so; she could support families like mine. It made me see things were going to be ok, whatever.
As we entered 2014 and the year Mike turned two, I really wanted to do something to mark the time that’s passed and valuable support the family that is, CMV Action have given us. I decided I was going to run and raise some money simply to say thanks. My big sisters, Ruth and Cath and my beautiful little niece Alice, wanted to support me; so we are doing this together.
The plan was to train hard, but 2014 and Congenital CMV had other ideas.
Mike has a feeding disorder as a result of his Congenital CMV and we discovered in February he hadn’t grown since July. A subsequent tummy bug left him poorly in hospital on IV fluids followed by NG tube feeding and finally, an intense tube wean which is where we find ourselves today. There’s been little time to train as the girls have been pulling out all the stops to support my little family and me through this time.
Although we haven’t trained physically, as hard as we would have liked, the last four months have been testament to all the reasons we are running for CMV Action UK. So our morale to run and reach our target is high. I’m finding post Mike’s bedtime runs, good for the soul and time away from our hectic schedule of behavioural psychology.
Congenital CMV has made the last two years of our lives hard, taken us to places we wish we’d never been, but it doesn’t have to be like that for other families. Awareness and education are the way forwards to a vaccine and in the meantime we can stand together to support families, like mine. We will be forever grateful to CMV Action.
Visit their fundraising page: http://uk.virginmoneygiving.com/team/MichaelKevinCMVFighter