"Try again. Fail again. Fail better"
I've always liked this quote from Samuel Beckett but I think I have only truly understood it after our son was diagnosed with Allan-Herndon-Dudley syndrome(MCT8). AHDS is a genetic disorder that brings severe motor and mental delay and has no cure. Receiving the news broke our hearts and shattered our lives into millions of pieces. We became two broken watches ticking time away in our own different worlds. The one who got us in sync again was none other than our son, Andreas-Rares.
As it turns out, he’s the best teacher we’ve ever had…and the toughest :) He made us realize that limitations only exist if we create them, that the one who should decide what he can or cannot do is him and not the syndrome. That we should push limits, question the obvious, argue the impossible and learn to live again a life where anything is possible. Andreas-Rares is now three years old. He doesn’t speak, walk or sit unattended but that does not make his life or ours any less fulfilled. We celebrate every small step forward with the same enthusiasm as conquering Everest because those moments are so very rare and so incredibly precious. He works hard for each and every one of those moments. He has two therapies per day plus “homework” so it’s usually a full schedule but we never forget to laugh and play, even a bit every day.
Follow our journey
If you would like to follow Andreas-Rares’ progress please visit his site www.andreas-rares.eu or his Facebook page https://www.facebook.com/Andreas-Rares-968947029806421/