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How we reacted to our daughter’s devastating diagnosis

October 1999

Emily was just over 15 months old when we finally received her diagnosis.

Our daughter has  Cri du Chat syndrome

We learned about Emily’s diagnosis a week before meeting with the genetic team.
Back in 1999, our internet was painfully slow and  there wasn’t much information available.  What we managed to find was depressing and seemed outdated.

I remember us sitting in comfy couches in the genetic counsellor’s office.  Emily was in her car seat on the floor, she was facing us as we were listening to what our life was going to be.

The genetic student sitting across from us looked our age or maybe even younger than us.  She regurgitated information she was reading in the giant book of everything a doctor needs to know.

Your daughter will never walk, talk, recognize you, understand you or show emotions.  She will be fed by tube as she will not be able to eat enough to grow properly. Your child will be in her own world.

I remember telling them that Emily knew us and recognized our voices.  When her dad or I entered a room and talked to her, she was looking for us. Her head, the only part of her body she could control, would be turning around looking for us. She didn’t do that for strangers.

The answer from the genetic counselor was harsh.

You want to believe she is recognizing you but in reality she isn’t… your daughter can’t do that.

It wasn’t my imagination!

She knew us and she loved us, in her own way!

Over the days, weeks, months and years following her diagnosis, I held on tight to the fact that Emily could recognized us!

If she could do that, what else would she be able to do?

We didn’t plan to lose a small piece of the short arm (p) of our baby’s 5th chromosome.

We never thought that she would be 1 of 50,000 born with Cri du Chat syndrome.

We didn’t imagine that we would be the ones teaching the medical professionals around us about Cri du Chat Syndrome.

Jonathan and I tackled this journey with outdated information and without a support system.  We loved our daughter and we were going to give her the best life we could!  We took a day off from work every single time we needed to see a specialist and we saw many.  We had 1 hour of Occupational Therapy and 1 hour of Physiotherapy per month.  We lived far away from our family and had no relief available.  We were Emily’s and each other’s only support system.

We were and still are Emily’s biggest fans!

I write “Lessons from my Daughter” to help raise awareness and give Emily a voice.
I hope you will come over and visit us!

2017-08-27T21:06:52+00:00 April 1st, 2016|Uncategorized|