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May 17, 2020 2 min read 1 Comment
Georgia cried and cried for months, she was so difficult to feed and seemed uncomfortable all of the time. We put this down to colic and being first time parents. We got on with it and enjoyed the moments we could.
Georgia didn't smile for 12 weeks. I'd take some photos of her 'smiling' and post them on Facebook or send them to friends, but I knew deep down it was just a lucky moment of wind. She wasn't smiling at me, she wasn't happy and something wasn't ok. Smiling was the first clue, followed by many more.
Georgia didn't roll, laugh or sit up by eight months. Again I would send photos to friends of her sitting up, but there would always be a strategically placed soft toy or cushion behind her, because it was only a matter of time before she fell back hitting her head.
As an Occupational Therapist, I debated daily whether there was something "wrong" - but as a Mum I knew there was. I just knew.
At 6 months I was certain there was a diagnosis to be made, suspecting autism - but I would always allow myself to be reassured by a post I'd see on Netmums; of someone whose baby hadn't sat up until nine months and had "turned out just fine" or a family friend who had never rolled over.
For 2 months I let it be, not really wanting the answer, because then the glimmer of hope I had would be gone, my worst fears would be confirmed and we would have to live that life...
That completely overwhelming 'it will never happen to me', terrifying life that just wasn't meant for us; not me and Sam.
On the 20th of September 2017 we got the confirmation: "Williams-Beuren Syndrome, 23 Gene's deleted from Chromosome 7. Learning difficulties and heart conditions".
The phone call went on for over 30 minutes, but those are the only words I recall.
Williams Syndrome was not news to us, with the gentle help of my sister we had googled and researched this syndrome for the past three weeks. The images of children we had seen (who could have been Georgia's brothers and sisters) could leave us in very little doubt we had the answers before we had the test to confirm it.
And here we are now, nearly three years on, living "our worst fears." Our daughter is amazing, our family is strong, and our outlook is positive. We are the lucky ones and this life was most certainly meant for us.
*Note: Georgia lives in England with her Mum, Emily and her Daddy, Sam. In Europe, Williams Syndrome is often referred to as Williams-Beuren Syndrome; as it was discovered independently by Dr. John Cyprian Phipps Williams, (New Zealand Cardiologist) and Dr. Beuren (Germany) in 1961. You can read more FAQs about Williams Syndrome here.
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July 13, 2020
What a beautiful young daughter you both have. Say hi to sister Emily! May success and happiness be with you all every day through your journey.