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Hannah is a beautiful angel with a big soul, who lives for the present. #Rett

My beautiful little girl, Hannah, was born on 28 March 2016. She was perfect. She was a happy baby, drank well and grew nicely. She developed normally … rolling at 5 months and sitting at 6 months. At about 10 months I started to worry a bit as she was not showing any intention to crawl or move herself around. We started #Physio when she was about 11 months old to get her to #crawl. Her tone was low and she was very lazy to move. She developed a tremor and used to shake uncontrollably

whenever she woke up.

When she turned 1 her pediatrician showed some concerns and started testing …. we tested her #thyroid and iron, we took #X-rays of her hips, tested her eyes and did a brain MRI. Everything was normal but we were referred to a neurologist for a second opinion. She finally crawled at 13 months! Her crawling was very slow and she was not pulling to stand at all. She had stopped babbling and had no understanding or expression of #language. We went to see the neurologist when she was about 17 months. This was the day we learnt the word “RETT”Its not a good diagnosis, he said. But we have to rule it out. And so she was tested for #RettSyndrome. As I googled and watched video after video, my heart broke. It took 10 excruciating weeks to get the results. On the 6 November 2017, we got the phone call.

Our beautiful little girl tested positive for Rett Syndrome. We were devastated as all our hopes and dreams for our daughter came crashing down. There would be no ballet recitals or dress up parties. No matric dance,no wedding. Everything changed that day. Or world was turned upside down as we mourned the loss of a future our daughter would never have. Hannah is now 2 and half. She cannot walk or talk and can barely use her hands, But she is happy. She is a beautiful angel with a big soul, who lives for the present. She is a light in our lives, and although I wish I could take this away from her, she is an inspiration to us and a very special gift.

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