Today was not about Tay-Sachs

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.

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.