CdLS Family Gathering 

in Winnipeg

Met some new and old friends for an afternoon at Dave and Lori's house in Winnipeg. It's always so great to meet up with CdLS families. There's so much to talk about in so little time. It's always so difficult to say  goodbye...

3 days and 30 hours of driving

Thursday:   Woke up at 4 am. Drove 13 hours. We slept at a truck stop in Wawa.
Friday:       Woke at 3 am. Drove 14 hours. We slept at a Walmart in Kenora.
Saturday:    Woke up at 7 am. Drove 3 hours. Sleeping at a campground in Winnipeg.

After driving for 2 days, our campground feels like paradise. The beast is not so difficult to drive after all. John was really tired on Friday so I finally got a turn. Yesssssssssss...It was really exciting!

Like any trip, there are always disasters. We didn't realize the bottom compartments were not water proof. All the boxes of books were wet. We quickly aired the books and cut off the soaked parts. We manage to save most of the books but 100 were thrown away...not so bad!

Funny thing about being over tired and all cooped up together in the beast...everything and anything triggers endless laugh attacks! Laughing so hard feels so great!

A trip of a lifetime - a trip we'll remember forever - thanks to everyone for making it happen!

2014 Tour

Couldn't sleep.

Too excited.

Left at 4 am on Thursday morning.

Squeak!

                                                               
      Pinch me...am I dreaming?

We're taking the show across Canada and down the coast of California to a CdLS Conference in the USA!
We have presentations booked in Winnipeg, Regina, Calgary, Creston, BC and Costa Mesa, California.

A CdLS Canada family gathering will be held in Winnipeg on June 16th from 2-6pm. Contact David Ireland by phone 204- 290- 1971 

A book signing will be held at the CdLS USA conference on June 27th  from 7-8pm. Hilton Orange Hotel.



Our sponsors have raised enough money to pay for thousands of books and dolls, our gas, our food and even an RV rental...squeeeeeeeeeeeeeeeeeak! We'll be flying home from California. Another CdLS family will drive the RV back to Ottawa! The rats will travel by RV both ways. I hope the rats don't make too much noise at night - squeeeeeeeeeeeeeeeak!

A BIG THANK YOU to all our sponsors. Your generosity is magical, unbelievable and a dream come true!
Big hugs and we hope to spread our message of acceptance and find new CdLS families!

9 minute video

I made a short video for a fundraising golf tournament being held in June  - " Hosie and Brown Auto Parts". I tried to summarize Tommy and Melanie's project from the beginning which started in 2010. I included many news clips. I was not sure whether to show the video to Tommy. It's so easy to make someone look famous when combining several news clips together. I didn't want him to think that way! 


 When I finally showed him the video, he was devastated. Tommy thought it was extremely sad. It took a few days for him to figure out why... He said the picture of Melanie in the hospital made him feel terrible. 
Melanie was absent from school almost 6 months this year for health issues. I think Tommy has realized many things this year and.... unfortunately ...one of them was that presentations, newspapers, and awards don't make Melanie any healthier. Click here to view video

Tommy and Melanie presented at Queen's University today!

The greatest audience ever! They laughed and cheered louder than anyone ever before!

...with a standing ovation at the end!

 WOW!!!! 

Big Squeak!

Congratulations Tommy!

Wow!

We had lunch on the 54th floor of the TD Tower.

We took a chartered bus to Queen's Park for a tour.

The award  ceremony was hosted by the Honourable David C. Onley, the Lieutenant Governor of Ontario.

We are so proud of you Tommy!

                                                      Ethan Scott

                    Ethan Scott

After our presentation at St.Brigid's School, Ethan went home and visited our website. He read all its content and proceeded to search for more information about CdLS around the world. Ethan convinced his mom to sponsor our project across Canada. Bija Bijoux would help donate books to one province in June 2014. Ethan chose Winnipeg, Manitoba. Ethan's mom was so impressed with his compassion and motivation to help us that Bija Bijoux also invited us for a book signing in Westboro next spring! 

Thank you so much Ethan! You are very special. We've presented in over 60 schools and you would be the first student ever to get us sponsored! 

 We are anxious to meet you... squeak!

Ontario Junior Citizen of the Year Awards 2103

Tommy was selected as one of the 12 final recipients for the Ontario Junior Citizen of the Year Awards. The winner will be announced in March 2014 at a ceremony in Toronto! 
We are so proud of you of Tommy!
 Squeak!

Tommy and Melanie have been invited 

 to do their presentation at

Queen's University !

April 16, 2014

Big hugs to Rachel for making this happen.

The rats are invited too

Squeak!

A very special day!

We had 2 presentations at Tommy's school on Friday. Melanie and Tommy got to spend the whole day together. They had lunch together, they went out for recess together, they presented in the gym together, they had a french dictee and they walked down the hall together.  

Tommy says, it was the best day ever! 

Squeak...the rats were there all day too!

               

 Our First Book Review

Cynthia Stuart, PhD is a professor of psychology and medical law and ethics at two Colleges in

 New York City.

Squeak !

We loved her review.

Click here and scroll down to view the review.

   17 days left !

           Squeak!

Book Launch

Our second book has arrived!

It will be launched on August 17, 2013.

" A Taste of Manotick " 4-10PM

Street closed - Pedestrians only

We will have a table set up outside Hair Ink.

Books, earrings, necklaces, dolls and much more!

Squeak...we hope to see you there!

We loved New Brunswick!
We had 4 presentations and a book signing.
Interviews with radio, TV and newspaper below.
Click here  and scroll down 

We met the only person with CdLS in all of New Brunswick.
Jayden is 9 years old and loved the rats.
Jayden's family got interviewed by radio and TV too !!!!

Here are the winners of the rat races:
Jay Bee, Chewy, Chewy, Jay Bee
What 's going on with Gerry?
Squeeeeeeeeeeeeeeak!

We may have found 3 other families with CdLS in New Brunswick! We hope to hear from them soon.

New Brunswick

Here we come!

Squeak!

We are touring New Brunswick in June!
4 schools and 1 book signing
Excited to meet new people and catch up with friends.
Check it out : click here
Rat are coming too.
SQUEAK !

Book Signing /  June 12, 2013 /  4-7 PM
Chapters. Indigo
499 Paul Drive, Dieppe, New Brunswick

Matthew spoke to his principal about Melanie and Tommy and their presentations.

The school invited them to present to the elementary students. Matthew offered to help. He would be the interviewer. It was great!

The school invited Tommy and Melanie back for another presentation. This time, they would be presenting for the High School Students. This would be Tommy and Melanie first High School audience ever!

 It was amazing! Squeak!

Jay Bee was too lazy to race.

Thank You Matthew for your support!

Selwyn House School

Montreal, Canada

Queen Elizabeth II Diamond Jubilee Award Ceremony

View the full ceremony -  15 minutes
Choir, Propeller Dance and Bagpiper
Thanks everyone...it was perfect!
Click here to view ceremony

Words cannot express how proud we are!
The full ceremony will be posted later this week.

Here is a short news clip from CTV,
Click here to view
and an  article posted in the  Ottawa Citizen.
Click here to read

We would like to thank Manotick Public School and everyone else for all their support!...squeak!

Montreal was so exciting!
We had a presentation at Selwyn House School.
The first rat race was tied !
A great excuse to have a second race...
We had an interview with Global Montreal, ate poutine for lunch and rode the Metro!

Click here to view video

Squeak!

Interview on television - Accessibility in Action Toronto
Click here for video
Some friends from North Gower School made it on TV as well.
Guess who won the race ?
Squeak.

                         

        On behalf of His Excellency the Right Honourable David Johnston, 

       Governor General of Canada, Tommy has been selected  to receive the 

       Queen Elizabeth II Diamond Jubilee Medal

      for his work in raising awareness about Cornelia de Lange syndrome (CDLS).

      Tommy will probably  receive his award in February.

      Squeak !

      Book Signing

        December 8, 2012 1-3PM

        Propeller Dance Community Day

        Richelieu-Vanier Community Centre

        300, avenue des Pères Blancs

        Ottawa, Ontario, Canada

        Squeak!

Speaker Night
 Holland Bloomview Kids Rehabilitiation Hospital.

The presentation was posted on Bloom Blog.
What an honour!
Click here for video.
It is 20 minutes.
First part: example of a school presentation.
Second part: Tommy the Sibling.
Ends with a rat race. Guess who wins? Squeak.
                                                                             

We are invited to speak at Bloom Speaker Night
November 8, 2012
Holland Bloorview Kids Rehabilitation Hospital 

Toronto, Ontario7-9 PM

Topic: Siblings

As parents, I don't think we truly understand the extent of how siblings feel.

Tommy is always finding new ways to connect with his sister.

He selected number  13 this year on his hockey jersey.

why?

Melanie's birthday.

Melanie's favourite number.

Melanie will be able to recognize him on the ice during a game.

Squeak!

Melanie started her Propeller Dancing lessons.

Based in Ottawa, Propeller Dance is the only organization in Ontario with the sole mandate of providing dance programming to children, youth and adults with and without disability.  Click here for Link

It was amazing, beautiful and really well organized!
Melanie loves to dance!
The rats love to dance!
Everyone should be allowed to dance!
Squeak.

We couldn't bring Jay Bee with us to the hospital for day surgery...so we brought two plush rats.
Melanie was happy to see them when she woke up!
Squeak. Squeak.

Cdls Conference in Chicago

Rats loved the fluffy pillows.
What a huge conference!
Tommy and Melanie had 2 presentations.
Many new families to meet.
Click here for 2min. video

Rick Guidotti, photographer from New York city took this photo.
It was so amazing to meet him! Squeak.

In 1998, Rick founded Positive Exposure, a non profit organization, that challenges stigma associated with difference by pioneering a new vision of the beauty and richness of genetic diversity. Rick’s photo essay “Redefining Beauty” in Life Magazine won the Genetic Alliance’s “Art of Reporting” award. Click here for Positive Exposure

         Tommy and Gerry stayed up to watch
          L.A. win the  Stanley Cup.
          Melanie and Jay Bee fell asleep.
          Squeak!

Dickinson Day Parade

Very wet.
Thanks everyone for your support.
Rats enjoyed the ride.
Squeak!

CdLS Conference in Toronto.
Tommy wore his special
squeak tie.
Melanie was very nervous
 so she asked
Victoria Johnson ( PhD student )
to sit beside her for support.

The rats were not invited but were not forgotten.
Rats earrings were a big hit!
Squeak!
click here to view 3 minute video

   Surprise Book Signings in May.
   All proceeds go to CHEO.
   We hope to see you somewhere in Ottawa.
   Squeak!

We all had to get our hair and make-up done before interview. Even the Rats.

AIA interview will be on TV in September.
Interview will be posted on website as well.
Squeak.

Happy Birthday Melanie !

Squeak out the NEW RAT VIDEO 3
I hope you like it!

Click here and scroll down .
Squeak.

Melanie and Tommy both received 20$ today.
Tommy put the money in his wallet.
Melanie had very interesting plans for her 20$.
Squeak.

We went to Cobourg for a hockey tournament.
Squeaked in a presentation.
Our new RAT RACE made the news.
Guess who won?
Click here for video.
Squeak.

Jay Bee wishing JB Happy 18th Birthday !!Squeak.

Melanie wanted to meet Abby. Tommy wanted to meet Ridley. The rats wanted to meet everybody.Click here to view   Squeak.

Website has reached 300,000 hits.

We made flags of the top 10 countries.

Do you recognize any ?

Squeak on the move. Squeak.

Hello Kitty is not talking to the Grinch?
Anyone know why?
Squeak?

               Squeak!

Barbie is so excited about her new  baby pet rats!

                         squeak...squeak...squeak

Smokey met Santa last night !
HOHOHO !
Squeeeeeeeeeeeak!

Christmas Parade in Manotick !
We wish you a Merry Squeakmas !
Squeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeak !

December Chocolate Calendar !
Melanie can't eat chocolate.
Smokey can't eat chocolate.
So Tommy did not eat chocolate.
Thanks Tommy.
Squeeeeeeeak !

Tommy's pet rat " Ninja"  passed away.
We held a very special ceremony
with many  special friends
for a very special rat.
Squeak!
 Click here video

Andrew Fleck Child Care Services had their 100th anniversary.
Theme: 100 people who have made a difference.
Tommy was invited as a guest speaker. ( click here to view 8 minutes )
Tommy and Melanie are invited back in 25 years for opening of time capsule.

Happy Halloween!
Squeak!