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Emily was diagnosed before facebook, the information available was outdated and scary.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
Shared and tweeted this on!
Thank you!
Not a problem!
Wow! Thank you for sharing your journey! I was aware of this syndrome before! I clicked the link for more info, and I’m grateful to have learned about it!
My pleasure. Would you believe that most of the doctors we’ve seen over the years have never encounter a person with Cri du chat syndrome? It makes things more difficult…
Reblogged this on Mysticalwriter and commented:
Raising~awareness for Cri du Chat syndrome, please check out her blog!!
Thank you!
Hi Pascale,
I don’t have a blog but I did share this on my personal fb page. Hope your audience continues to grow, love reading your musings!
My fb post
https://lessonsfrommydaughter.me/2016/02/21/rasing-awareness/
Sharing for a friend… Her blog is inspirational, witty and interesting, a good read!
Thank you!
Reblogged this on Joe's blog and commented:
Let’s help Pascale get to 1000 blog followers on WordPress….. keep this going and get the word out there on CdCS
Thank you Joe
You’re very welcome! 🙂
Reblogged this on hbhatnagar.
Thank you
You’re welcome.
Shared on my page. Although i think most of my friends are probably aware of what Allie and Emily have. Thanks for all you do.
My pleasure and thank you for sharing!
I’m happy to re-blog this for y’all. In fact, I just did! 🙂
You are the best! Thank you so much!
😊
Reblogged this on sonofabeach96 and commented:
Please check this site out. She and her daughter are an inspiration to any family with a child with special needs.
Thank you! I really appreciate the “share”
No worries. You guys are great! Hope you get to that 1,000 mark. 😃