Cri du Chat Awareness Week 2018 (Day 1)

With a rate of 1 in approximately 35,000 to 50,000 birth, Cri du Chat randomly appears between 8 and 11 times per year in Canada.

In a country covering 9.985 million squared km, these babies can be really far away from one to another.

For us, when Emily was little, it meant no other families were near by.

In 1999 when she was diagnosed, it meant that our only source of information was a really slow internet connection.

Fast forward to today, the internet is faster, facebook is full of support groups and many bloggers are out there raising awareness.

Although I no longer blog regularly, I am still one of these bloggers!

Welcome to our journey!

Cri du Chat Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications.

Cri du Chat Syndrome is also called 5p- (5 p minus) Syndrome.

The term “5p-” is used by geneticists to describe a portion of the short arm (p) of chromosome number 5 that is missing.

Cri du Chat Syndrome is a spectrum disorder.

Children born with this rare genetic condition will most likely require ongoing support from a team of parents, therapists, and medical and educational professionals to help them achieve his or her maximum potential.

You can find more about about Cri du Chat syndrome at 5p- Society

If you’ve been following our blog for awhile, you know Emily is not defined by her syndrome! She defines it and proves every single day that she is more than her syndrome.

Over the week, I will do my best to tell you more about Cri du Chat Syndrome!

We have a facebook page: 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.

You can also find me on Twitter at @plebrass

#CriduChatAwareness

Look who’s sitting in her car again!

Me!

This time, I’m in front of one of the local Boys and Girls club, it’s after dinner time, it’s cold and I didn’t bring my book.

Emily is in there with the lady from Community Living and her intern.

If it goes well tonight, this could be another recurring volunteer gig for my girl so I’m sitting here for what could be 3 hours…

Here’s to hoping she can have support worker hours approved to help with this as I can’t imagine I would enjoy volunteering here to help her.

How I wish I could be a fly on the wall to see how the kids are reacting to her, if they are nice to her, if she fits in.

I hate not being with her and provide her a buffer just in case but I know I have to give her room to learn and grow…

This is a crazy roller coaster ride my friends and here I thought it would get easier once she would be an adult.