Tuesday, 21 February 2012

The First Post

On 24 th June 2003 our second child Max was born.Soon after Max's birth it became clear that he was not following a typical developmental pattern. At age 15 months a Paediatrician told us he had Global Developmental Delay and low muscle tone ( hypotonia). It was to take a further 5 years until we discovered the cause of these difficulties. Max has a rare genetic condition caused by a microscopically small deletion ( missing piece) on chromosome 16. I intend to write about our journey with Max, his condition and the impact it has had on our family and our lives. I will use this blog as an outlet for my thoughts and emotions and hope that in doing so it will act as a form of therapy. Our life has become " the road less travelled" I hope that by writing about it I can help my fellow travellers on their journeys. When Max was small I was told by a parent of an older child with a disability that I was in for the biggest roller coaster ride of my life, I don't think I could have imagined then just how true her words would be. In the past eight years I have experienced the most extreme emotions, I have become stronger than I ever wanted to be.The strength of my amazing husband and the compassion of my beautiful daughter combined with the love and support from my family and friends has carried me through some of my darkest days. Max is truly unique he is complex and challenging and the sweetest little boy you could ever meet. 
Floppy, bendy boy aged 2.


  1. Sorry it took so long to find what it was, I hope you get outside help and support too

  2. Will be following your blog with interest. My son has chromosome 22q11 deletion, which is more common but still complex and there remains a lack of awareness xx