It’s always hard to know how much to share about our sweet George, because, being nonverbal, he can not tell me whether it is ok or not. We kept thinking that, should George grow up to be a typical child or grown-up, he would be sad or embarrassed to have his not so typical childhood shared.
This has changed now.
A little while ago we came across a rare genetic disorder with symptoms which describe our little Boo perfectly.
It was emotional, humbling and a bit scary to see that all the things that we thought make George so unique are all symptoms, that there are other children just like George, parents just like us.
Today we went to see a wonderful doctor to talk about our journey towards a diagnosis.
The next step is the (long) wait for an appointment with the paediatrician, and hopefully a referral to genetic testing after that.
We decided to from now on share our journey, more about George and the challenges (and joys!) we face, and the amazing people we have met. We decided to do this to raise awareness, to connect with other parents going through a similar situation, and to remember this part of our life.
Since finding about about the syndrome, the name of which we are not ready to share until we know for sure, all our plans have been changed, but our goal remains the same, – we will give our little ones the most amazing, fun and happy childhood we possibly can, whether that childhood lasts ten years or sixty years.
Thank you for sharing this journey with us.