Please get in touch if you’d like to help, or have a story to share:
We are parents to a beautiful little girl called Amélie. In March 2011 Amélie was diagnosed with a Lysosomal disease called Tay-Sachs.
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.
How to Help
Today Was Not About Tay Sachs works in conjunction with CATS Foundation. We are dedicated to finding a cure and supporting families!
To donate now please click this link to CATS Foundation, donate and learn more about Tay-Sachs and how you can help.
A few days ago I came across this blog post via a friend on Facebook. I read it while I was putting my youngest daughter to bed and it stayed with me – To parents of small children: Let me be the one who says it out loud - I wanted to let Steve know that [...]
My dearest (I think she wouldn’t mind me calling her friend) Deborah has just posted the following on Facebook: ‘I am thinking of making Isabella a badge to wear, it would say the following: “My name is Isabella. I am 4. Past 4 and 1/4 and heading for 4 and 1/2. I can hear [...]
Emily Rapp is a writer, she has always been a writer, it is her profession. So when I read the article – Obnoxious Questions People Ask Me About Writing About My Dying Son - I was beyond astonished that she had been asked those questions, but only for a second.. I first ‘met’ Emily shortly after [...]
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One of the first parents that contacted me through this website told me, amongst other things, that it must have been lovely to see Amelie grow and develop until the disease started affecting her but she also told me that it must be equally devastating to have to watch all she learnt disappear. At the [...]