I know when I first was told the genetic cause of my daughter Angelina’s brain abnormalities it initially felt overwhelming, a number of questions I immediately asked myself were questions like “what does this mean? Will she die young? Will she ever learn to walk? Will she ever say mum? Will she ever play like other children?”
What helped me during this time and even now, was speaking with other parents in similar situations whether its another CASK family, or another family with a child with special needs or a rare disease, it really helped to feel like I was not alone and someone out there just understood.
There is a fantastic CASK Gene Parent Support Group on FB – please join this and you will find lots of questions, answers, stories, help, laughs, tears but each of those families have a silent understanding and great respect for each other.
The CASK Gene Parent Support Group
Please also see this Information Booklet on CASK which is provided by Unique a Charity in the UK for rare disorders.
( View Booklet )
There are a number of CASK Foundations with valuable resources please see below links to each: