Today was not about Tay-Sachs was born out of a simple thought… We were driving back home one evening after a nice day out to visit Amélie’s grandparents when it occured to me that it had not been about Tay-Sachs. We had been a family like any other who sat for lunch and dinner, went for a stroll, played with our daughter, took her for a swim in the pool and allowed her to watch CBeebies before going to bed.
I then started thinking that since Amélie’s diagnose a few days had been like that, although our daughter suffers from this awful condition and we had to change our lives and adapt a lot as she has too, we have had days where we were just as happy and positive as any other family, but mostly these were days when we did not allow the disease to take over our lives – these were the days that have felt the best!
So I discussed with Daniel that I wanted to start a website where families who are unfortunately going through the same could share, inspire and feel a little bit positive whilst forging relationships and getting support from others that truly understand what they are going through.
Today was not about Tay-Sachs was created very quickly thanks to our great friend Steve who has stopped at nothing to get it done and looking as great as it does.
We will be updating this website as much as we can with our experiences, with acquired knowledge, with facts on the disease and research and with fundraising activities in order to find a cure for Tay-Sachs and its allied diseases.
So friends and family please contribute with your words and stories. Awareness is a big part of our fight and could prevent other people from going through the same.