Today was not about Tay-Sachs

Amélie in Milan

Amélie in Milan

Welcome to our new blog!

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.

3 Comments

  1. Reply
    Shelly May 20, 2011

    What a lovely website and a beautiful thought. My son, Kaleb, was diagnosed with Sandhoff’s Disease (a more rare form of Tay-Sachs) on March 19, 2010. Since that time I have connected with other families who have been and are currently fighting a lysosomal disorder and they have been of great comfort to me. Sometimes you feel so alone in what you are going through, but you aren’t – there a others, unfortunately, who understand all too well.

    Thank you for sharing your daughter with us!
    Shelly Ogden
    http://www.caringbridge.org/visit/kalebogden

  2. Reply
    Karen May 20, 2011

    This is a lovely website and it will be of great help to other parents. My daughter, Abigail, had Sandhoff disease and went to play with the angels 2008. We live in North West England.

    • Reply
      Patricia Durao May 20, 2011

      Dear Karen, thank you for your post and I am so sorry that you lost your daughter Abigail to Sandhoff disease. My heart goes to you and your family. Perhaps if you could keep in touch you could be of great help and strength to families that are now going through the horrible journey that you have been too. My warmest wishes to you and your family.

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