Pencil it in

  The reality of having a daughter with a rare chromosome disorder that comes with a long list of symptoms is that not much in life is fun any more. It impacts everything; every plan, every event, every day. It’s like living in one of those fairground mirror halls where your brain expects one image,… Continue reading Pencil it in


When Imogen was diagnosed with 3p25 deletion syndrome I focused my energy (when I wasn’t feeding, changing or otherwise looking after our newborn baby) on searching the internet for any information, therapies and charities that might be able to help in anyway. I guess my coping mechanism was to learn as much as I could and… Continue reading Brainwave