Raising awareness!

Early May 2013
In the spirit of the 2nd annual Cri Du Chat Awareness week, I did something I never thought I would do……  Actually, I always figured it would be pointless to do……  I sent a letter to the Director of Medical Genetics, McGill University health centre / Montreal Children Hospital.  I wanted him to know what happened when Emily was diagnosed.
I have removed the names from my original email as I didn’t ask permission to use them.
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Good afternoon Dr. xxx,
 
I am hoping this email finds you well and that you will allow me to have your full attention for maybe 10 minutes.
 
In October 1999, our daughter Emily was diagnosed with the Cri Du Chat syndrome.  At the time, we lived in Mont-Tremblant, Qc and Emily was followed at the Montreal Children’s hospital.  Dr. xxx was her neurologist and thanks to all the test she had ordered for Emily, we finally knew.
 
During our meeting with the Genetic resident and her student ( I am sorry, I am sure I am using the wrong terminology…) we were told that Emily would never walk, talk, recognize us, show emotions or feed herself.  We were told to expect that our child would be in a wheelchair, fed by tube in her own world…  At no point were we told that this was worst case scenario… when I mentioned that our 15 months old daughter recognized voices and smiled at us but not at strangers, I was blankly told that this was my imagination, that our daughter did not recognize us.  In the month following Emily’s diagnosis, I called the clinic inquiring about various component of her diagnosis, I was labeled the mom who went on the internet a lot….  I can live with that!  I am sure I have been called worst over the years of advocating for my daughter…  
 
Today, Emily is a lovely 14 year old girl, she is nowhere near her classmates in school knowledge but she walks (with a walker at 3 and independently at 4).  She is toilet trained (took us 9 years but we got there).  She is bilingual…  understands English and French but tends to answers in English first.  Her voice is different than the other kids but most people understands around 80% of what she says, for those lucky enough to spend lots of time with her, they understand her 100%.  She is tall, 5’7” and her weight is proportional to her height (120 lbs or so).  She is stunningly beautiful in her own way.  I have attached a picture for you to see her!  Every time we get to see a new doctor, they have their big book open and they are expecting worst case scenario, they are quite surprise when she walks in.
 
The picture attached was taken in Bermuda last fall.  Emily travels with us, we’ve seen lots of amazing places together and we will continue to do so.  She is curious about art, loves to try different food (she loves sushis), has an amazing imagination and struggles in math.  She wants to be better at reading so she works with a tutor on her math and as a reward, she gets the equivalent time to work with a tutor on her reading…      
 
May 5th to 11th is the 2nd annual Cri Du chat awareness week!  As you now know, Emily has the cri du chat syndrome and this brings me to the you tube video attached.  The video was developed for the awareness week and Emily is in it… 🙂
 
Considering that the stats now say that 1:35,000 newborn will have the Cri Du Chat syndrome, the likeliness to meet one while walking around is pretty slim.  It is also quite rare for doctors to see a child with CDC as we have noticed over the years.  As for us, we still haven’t met another person with the same syndrome as hers but all this will change this summer when we will attend a conference in New York for individuals with cri du chat syndrome and their families. 
 
The video is just over 4 minutes long and the objective is to raise awareness, to show that instead of focusing on all the things our kids can’t do, we should be told that the spectrum is wide and that our kids can do lots of things!  The video will be use in PR campaigns and send to hospitals and tv stations all over the world! It’s informative and really well made.  I have put the link below for you to have a look and I would appreciate if you would share it with the team at the Montreal Children’s hospital. 
 
I wish I had been told that the picture that was painted for us in October 1999 was worst case scenario! 
 
Emily is really excited to be in the video 4 times!!!  She feels like a superstar and is keeping track of the views count on you tube!!! 🙂 
The video is on you tube, just search International cri du chat syndrome awareness video!
 
Regards,
Pascale (for Emily)
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Not only did I get a reply to my email but he forwarded it to all his colleagues within the genetics dept. at the University and Hospital.  I got an email back from a genetic counsellor asking if she could give my contact info to a family she met earlier in the month with a baby boy who was diagnosed with the Cri Du Chat Syndrome
I shared this email with some friends, and again, their reactions were overwhelming.  They asked me to share more information, told me I should write a book about Emily,  her syndrome and our life….
Instead of a book, I started this blog!
Once again, Emily pushed me outside of my comfort zone.  I have protected Emily and our privacy for almost 15 years…  This is our journey.
I hope you enjoyed the video!!!
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Public speaking – You want me to do what???

Within a year of Emily being diagnosed, we are spending most our free time at the hospital…

We work weekends and take days off during the week in order to go to the hospital….

We break our vacations into tiny pieces in order to go to the hospital….

A trip to the hospital requires a full day. We live a couple of hours away, it takes longer when we factor in traffic so sometimes we actually need to get to Montreal the night before due to early appointments.

So, once a month, we take a day off to drive to Montreal to meet with our physiotherapist and occupational therapist to learn how to play/work with Emily. On the way home we buy whatever supplies we need to practice what the PT and OT are telling us we need to do.

Both therapist are amazing and our OT believes I am the greatest mom….. 🙂 I liked her even more for saying that! She is convinced I should quite my job, go back to school and become an OT….. WHAT??? I work in accounting in the hospitality industry and I LOVE it!!!!

I had to explain to our OT on multiple occasion that the only kid that is allowed, to sneeze, vomit, pee, cough or splatter any other type of liquids on me is Emily!!! Slowly, she gets it, she stops asking me to go back to school….. but than she asks me to go to University!!! As a public speaker!!!! WHAT???

Me! A public speaker at McGill University!!!

Me! Little French me with limited English at the time!

Me, scared to speak in front of a crowd….

Me?!?!?

I had no idea what to say to that…. The university needed guest speakers and they figured out that a parent who was really involved in their child’s treatment would be great… ok, I can see why that sounded like a good idea!

But me???

Now, I am scared! I know I can’t do that!!!! But if did do it…. if I managed to touch 1 student…. it could have an impact on so many people…. so many patients……

If telling our story could make one student realize that my daughter is not a syndrome, that she is a little girl and should be treated as such! If telling our story could help other kids be treated as kids, other adults be treated as human being and not as a syndrome, not as a disability or as someone who had a tremendous accident…..

I could make a difference!

Could I do that? Wow!!!! I was going to do that. I only had 1 request, I needed Emily there with me…. I figured the students would be looking at her not at me… 🙂 The university was quick to reply that Emily should be there with me.

So I did it, I agreed to be a guest speaker at McGill University!

Not only did I go that year, but I went the following 2 years! On 3 occasions Emily and I were invited to McGill University to speak to a group of occupational therapists in the making. From one year to the other the teachers would tell the students about the progress they were seeing in Emily. First year, she sat in her stroller, second year, she had a walker, third year she was walking around, looking at the students and eventually settling on a desk in the first row where someone gave her a piece of paper and some highlighters…. I was delighted to see her work the crowd!!!

From year to year, I got better at it! My English was improving and I knew I was making a difference.

When we left Quebec to move to New Brunswick, the teachers at the University were sad to see us go! From time to time I wonder if they still have parents going to the University to talk to the students, I hope they do! I wonder if one of those students remembers Emily and I coming to visit…. I hope at least one students per year remembers us and has become a great OT with amazing human skills allowing him or her to see a little kid or an adult as such and not as a case or a syndrome!

I hope Emily and I made a difference!

To this day, I believe I wouldn’t have done this if it wasn’t for Emily pushing me to be a better person even before she could speak.

Emily took me from “I can’t speak in front of a University class in my mother tongue there is no way I would do it in English……. ” to ” Emily is not giving up on achieving milestones, who am I to give up on achieving milestone?”

We are never too old to learn!
Thank you Emily for helping me grow!!!

How are your kids pushing you to be better? Would you recognize them pushing you to grow?

sittoy