Cleidocranial Dysostosis

We’ve just returned from parents evening. Another stark reminder that our child is falling behind. That she is constantly having to play catch up both academically and socially, as well as learn to live with the ups and downs of her rare genetic condition. She is so proud to be that 1 in 1 million. [...]

A letter to myself: Today, life stands still. Today, you will wonder what on earth happened in life for this enormous, life-changing, frightening diagnosis to be placed at your door. And what could be worse? That it hasn’t landed at your door, it’s landed at your precious 2- year-old little girl’s door. Your baby, the [...]