Getting a CASK gene diagnosis: The diagnosis is the first step on a long road to acceptance. Everyone deals with the news differently but here, at CASK Research UK, we want to tell you that you’re not alone and there is light at the end of the tunnel.
We asked CASK parents what they would say to a newly diagnosed family. Below are their top ten tips:
“We were told our daughter would never walk and she runs and surfs and swims and skies the limit!”
“It’s okay to grieve and grief should be expected. We think that we need to immediately become super parents that we push our grief aside. It’s okay to hold space for it and do what you need to do to work through it, and that will look differently to everyone. But if you don’t honor it and work through it, it can consume you. So cry, kick, have a glass of wine, talk to someone or whatever it is you need. It’s a life changing diagnosis and it’s okay to not be okay at first. Give yourself a minute before you move forward.”
Some of our families blog on social media such as Wellies and Willow. Follow them and other families that use the hashtag #kickingcask for support, advice and friendship.
You can also read family stories here.