BiographyAt Hannah's 20 week scan it was detected she had a duplex system on her left kidney and renal reflux on her right kidney, she also had a 2 vessel cord. This was a clear indication that she would be born with a chromosome disorder. When she was born she was checked for Down Syndrome which was clear and we were told there were no other issues other than the kidney problems.
As a second time mum I knew from day 1 there was an underlying issue. She wouldn't or couldn't feed properly, she had severe reflux, she wouldn't sleep for more than an hour or two at most, she wouldn't focus. The list was endless but she was happy and ,always smiling. Hannah missed all her milestones and at 10 months old she was seen privately by a neurologist who after an hour, told us she had either Rett Syndrome or Angelman Syndrome. He was convinced Retts. Hannah was finally diagnosed with Angelmans at 17 months old. She is now a happy 11 year old. She suffers with seizures which are by far the worst part of Angelman's. Hannah is non verbal and is in the 10% of Angels who don't walk. Her temperature is often very low and her oxygen levels drop off significantly. Her sleep is still an issue, she can sometimes sleep for as little as 4 hours a night. Infections are always tough on her, it takes her a long time to recover. In 2012 Hannah had half a kidney removed, post op she was a very poorly little girl and took months to recover. No matter what is thrown at her she is still smiling XXX
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