SOME people ask what life is like with CMV so we try to share as many stories as possible on our website www.cmvaction.org.uk. This is just one of those stories but it helps to show that like every life, life with CMV is a journey with challenges and triumphs. This is the story of Hazel and her Mum Lindsay Freeman.
Lindsay’s wonderful daughter, Hazel, was born in 2011 with a congenital virus. Cytomegalovirus. They didn’t know this at the time or what lay ahead for her and for Hazel…which turned out to be lifelong disabilities.
How it began…
Despite having constant scans in pregnancy (as something wasn’t quite ‘typical’), and then later frequenting hospital in the first few weeks of Hazel’s life with various concerns, no medical professional considered cCMV. Neither of them was screened for this viral infection until a paediatrician asked if they 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. Their research began and so did educating every medical professional they 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. She only received an official diagnosis of cerebral palsy when she was 7. That’s when medics moved away from using the term ‘developmentally delayed’ and they understood her physical disabilities would be lifelong.
Lindsay says that despite all her challenges is an absolute joy to the world. Boundless love, fun, positivity and a desire to connect with everyone. She has an amazing zest for life and a 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.
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. This is why Lindsay is running the Manchester Marathon in April 2022.
“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 every day!”
To support Lindsay in helping raise awareness of CMV please visit her JustGiving page.