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Kara's Story
"I am a 23 years old cCMV sufferer..."
I am a 23 years old cCMV sufferer. As soon I was born, I was never settled. I constantly screamed, crying. Anything my parents did, has never worked! That left my parents wondering what was wrong with me. We all had plenty of trips back and forth doctors surgery and hospitals for multiple tests to find out what was wrong with me. Result came back, confirmed I had CMV before I was diagnosed profoundly deaf. My parents admittedly say they were too shocked to absorb the whole thing about me being deaf and a cCMV sufferer. I admit I made their life hell but, there is nothing we can do about this. I am proud for who I am, I wouldn’t change me for the world!
I am profoundly deaf in both ears (currently has a CI on my left ear), microcephaly, behavioural problems, and poor eyesight as well as epilepsy. She also vaguely remembers doctors saying I was profoundly deaf. I would also go blind and wouldn’t see my 5th birthday. Right now, my mum says things they say are full of crap. Some things are not true. Look at me; I’m still here, its 2011!
My point of view, doctors may know a lot of medical things but they’re not fully accurate about cCMV, they don’t actually know what it is like to live with it and they can’t predict what will happen in the future. Like saying I wouldn’t survive for long! I believe they should explain that it could happen but NOT “will” happen. They should reassure parents with cCMV children and support them thoroughly!
Well, what can I say; I may be a cCMV sufferer but, I was given a great opportunity to live my life normally like others and I have a very healthy 7 month old baby. This shows children with cCMV are capable of anything. We have BIG personalities and we’re no different than normal children. The best thing about this disease is it brought me a massive circle of friends and opportunities of helping people with same problem. I will NOT allow cCMV to rule my life, I am ready to give cCMV a good kick, and help change everything as much as I can.
-Shared by Kara