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Our wonderful daughter, Hazel, was born in 2011 with a congenital virus. Cytomegalovirus.  We didn’t know this at the time or what lay ahead for us and for Hazel…which turned out to be lifelong disabilities.

Despite having constant scans in pregnancy (as something wasn’t quite ‘typical’), and us later frequenting hospital in the first few weeks of Hazel’s life with various concerns, no medical professional considered ccmv.  Neither of us were screened for this viral infection until a paediatrician asked if we wanted to go through a battery of tests to investigate the cause of her deafness.  She was 7 months old at this point.  She tested positive for cytomegalovirus and it was confirmed she had it at birth. Our research began and so did educating every medical professional we came into contact with.  And there were quite a few of them due to Hazel’s wide ranging needs.

To summarise; Hazel is profoundly deaf, has cerebral palsy, a balance disorder and learning difficulties.  

It’s been a case of ‘wait and watch’ to see her issues present.  Hazel didn’t walk until she was almost 5 years old and only received an official diagnosis of CP when she was 7. That’s when medics moved away from the using the term ‘developmentally delayed’ and we understood her physical disabilities would be lifelong. 

Those of you who know Hazel understand what an absolute joy to the world she is.  Boundless love, fun, positivity and a desire to connect with everyone.  She has an amazing zest for life and true appreciation for everything.  That said, everything is a struggle for her. Learning is hard, socialising can be challenging, even getting herself dressed (at 10 years old) most of the time is not achievable.

I am very intimidated by the prospect of running for 26.2 miles - even more than ever since my training has been blighted by illness (including a different virus that we are all now too familiar with).  When it gets difficult I will draw on Hazel’s strength, which she has in abundance.  I may have a few hours of pain and struggle but I will remind myself of the daily pain and struggle Hazel encounters. I will attempt to smile my way through as I see Hazel do everyday!

CMV Action’s motto is ‘Educate - Vaccinate - Eradicate’. Our story may have been different if only I was educated in CMV and could have prevented picking up the viral infection in early pregnancy, or if the midwives knew of the risks or signs of the virus, or the paediatricians for that matter.

Every tiny bit of funding helps this small charity to support families affected by ccmv, educate health professionals and work towards vaccination to eradicate the devastating impact this infection can cause.  Hazel was fortunate to be ‘mildly affected’ despite her need for specialist education and full time care. Some babies are born with very serious health complications and others don’t manage to survive the virus.

If you can donate anything it will make a huge difference. If you can read about Cmv and spread awareness, that’s equally powerful.  Thank you so much.

And wish me luck - I really am going to need it!!!

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