A Very Rare Adventure

DESSH and Infantile Spasms Advocate


We are on a very rare adventure

I'm Katie, meet Kasper


our family

At the ripe old age of 32, I have realised that, for me, New Year is not about making resolutions or trying to become a new person but it is a time to reflect back on the year: the highs and the lows.

sleeping baby

Does anyone? I thought to myself. “No”, I said out loud. How could I explain to the therapist opposite me that I felt like all my mum friends had received a manual on how to raise their child and I seemed to have been overlooked.


How often have we heard these comments about our children…

"Getting my son’s diagnosis signified a new beginning for my family. A new beginning means hope"

To listen to my interview on the incredible Once Upon a Gene podcast, please click the button below.