Next Steps for our SWAN

As readers of my social media pages may have seen we were called up to GOSH Thursday and we weren’t really sure why. We knew it wouldn’t be for a diagnosis as all the tests had come back negative and there’s no way the 100k Genome project would have an answer within 2 weeks of…

The life of a SWAN

Swans are beautiful, and they have a certain majestic quality to them. The fact they are pure white to me always represents their innocence. My daughters a SWAN, not because she is a bird, but she is a child with a syndrome without a name.  She captivates everyone she meets with her beautiful smile, she…

Undiagnosed does not mean she’s fine

I had a strange conversation with someone over the weekend. They were talking to me about BBG and the end sentence stopped me in my tracks, ‘at least she isn’t ill, I know X and their seriously ill with Y condition. You should be glad’ I stopped in my tracks as they said their farewells…

New report and still stuck in the dark

Today we received BBGs GoSH report. We always hate these reports coming through as when you live with a condition that becomes the new normal. We know of the delays, we know of the different abnormalities, but to us BBG is normal and perfect. Even though the drs and consultants speak to you really openly…

A lot can change in 23 years

So feeling pretty poop at the moment so trying to find ways of thinking positive. This morning MOs school phoned as his behaviour was immense, resulting in a hurt friend and an anxious MO as he lost his front spot in the lunch queue. All I could muster was an ok. It didn’t even click…