Emily’s 9th Birthday!
She was so little but I clearly remember thinking that she was getting old…
February 29th is Rare Disease Day
In my own way, through writing about our experiences raising Emily, I continue to spread the word about Cri du Chat Syndrome (CdCs)
I do my best to share experiences that are positive, fun and inspiring. I don’t shy away from writing about struggles but I will always respect Emily’s need for privacy on some more personal topics.
Did you know…
Only 1 in approximately 50,000 born will miss that tiny part of their 5th chromosome…. chances of knowing or meeting another child with CdCs are really small.
Emily was diagnosed before facebook, the information available was outdated and scary. It took us 15 years before we met others with Cri du Chat Syndrome.
Now with facebook, association and blogs, our reach is far greater and parents find up-to-date information much faster.
That being said, it is essential to increase awareness to promote acceptance for any child with special needs.
I would love for Emily’s blog “Lessons from my Daughter” to reach as many people as possible…
Would you help me by sharing this post? Please help Emily and I raise awereness for Cri du Chat Syndrome!
Thank you for being part of our journey!
Find more about about Cri du Chat syndrome at 5p- Society
Emily has a her own page in the family stories , you can find it here: Emily
If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page on Facebook.
You can also find me on Twitter at @plebrass
I am on Pinterest too… one day I will figure out what to do there other than finding cool recipes but meanwhile, you can find me here: Lessons from my Daughter