Contact Us
Please get in touch if you’d like to help, or have a story to share:
Welcome
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.
Latest Posts
-
You are not terrible!
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 [...]
-
S for Special not for stupid!
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 [...]
-
Forgive us for not falling into misery…
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 [...]
-
First spoonfull
Digg this post Recommend on Facebook Share on Linkedin share via Reddit Share with Stumblers Tweet about it Subscribe to the comments on this post Print for later Tell a friend
-
The joy of looking back again
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 [...]
Recent Comments