About Us

Who we are

We are parents to a beautiful little girl called Amélie. In March 2011 to our great shock Amélie was diagnosed with a Lysosomal Storage Disease called Tay-Sachs. Since then our world has fallen apart and turned upside down. Tay-Sachs and its associated diseases have a devastating effect on the child and their families. We know that the road ahead of us is the worst that any parent could ever imagine to have to go through, at the moment there is no cure for Tay-Sachs or any of its associated diseases but research is on the move… and we will do everything in our power to make sure that we assist in any possible way.

What is todaywasnotabouttaysachs?

We believe that although facing a terrible and daunting fate children with Tay-Sachs and associated diseases are not defined by the disease itself. Each one of our children has it’s own personality, life and soul and the aim of this website is to raise awareness in a positive way while bringing parents and families together who are trying to cope with the diagnosis and day-to-day life.

We have learnt a new way to live life, and that is to live every single day at a time. As parents it is our duty and our pleasure to make sure that our child lives her life to the fullest and that she can experience everything that life has to offer within her limitations, we believe that this is a fundamental right to any child and our aim is to share with other families our good times and the days that were not about Tay-Sachs, the support we are receiving from family, friends and the community, and to ask other families to do the same here.

By doing all the above we hope that families can inspire other families into doing activities with their children, to show them the world, to inspire their communities into aiding children like ours and so many others that suffer from other terrible and life limiting conditions and to at least try to have a great day everyday!

Finally we would like to say to all parents and families affected with Tay-Sachs and associated diseases that we are sorry that you are going through the same as we are, we would not wish this on anyone. The reality is that we are all in the same path, just at different stages – we believe that we could help each others with our experiences, with our feelings and even with our practical knowledge. It is up to us to make our children’s day-to-day joyful and to adapt to what joy they can experience along the way.