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Meet Alma

My name is Melanie my daughter is an unforgettable little firecracker named Alma. She is an inspiring little go-getter who loves dancing, surprise eggs and having parties with her friends. Alma was born 6 weeks early and weighed 3lb11oz. Right from the beginning, it was obvious that she wasn’t developing like a typical baby.

williamssyndrome.ca // Alma grin

Alma was diagnosed With Williams syndrome

At the age of 5 months, we learned that she had Williams Syndrome. When I first learned about her diagnosis, there was no support group to turn to in Toronto and local resources were limited. Learning your child has some rare thing you’ve never heard of is incredibly hard. While everyone was supportive, I didn’t really have anyone who “got it.” So I made it my mission at that moment to work to ensure no one who hears the words “your child has Williams Syndrome” ever feels alone.

williamssyndrome.ca // Alma Defies labels

We’re stronger together

Alma is now in senior kindy class with her typical peers with support in the classroom. She is learning new things every day and continually surprises us with her tenacity, determination and her joie de vive. Advocacy used to feel like a full time job, but things have gotten easier. I know there are a lot of new challenges ahead, but right now we’re lucky to have the time to enjoy the here and now.

williamssyndrome.ca // Alma Special Olympics

Go go go

There was a time when I wondered what she would be able to do. Would she have the same kind of childhood that her brother has? Or that I had. While there have been some bumps in the road, for the most part, at 5, Alma has a pretty regular life. She takes swimming, ballet, belly-dancing and is a keen participant in Special Olympics Active Start. She is valued and cared for and might just be the cutest kid I know (tied with her brother of course).

williamssyndrome.ca // CAWS conference child care

Why CAWS matters

Knowing there is a network of parents and professionals in Canada who are always there to answer questions, lend support and offer advice is invaluable. From services and support, to a sense of community and advocacy research and more, the association has made a big difference for our family and I hope by lending a hand, I can do the same for another. Thanks to our generous donors, we are working to create even more connections, opportunities and information for parents, caregivers and Williams syndrome individuals.

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PS:

When Alma was a baby, a friend created this lovely video of our family. Enjoy!

Interesting Is Everywhere – “Alma” from Sugino Studio on Vimeo.

WINTER 2018

In this edition, you’ll find details on the changes to the music scholarship program, a heartfelt tribute to Evan Dew, a review on a new book about managing behavioural challenges and the incredible letter from a mom to her daughter included below.

 

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To my daughter, whose brother needs a little more attention

Remember when I said “I wish I could split myself down the middle”, so I could be with you and your brother at the same time? I meant it with all my heart. 

But unfortunately, I don’t possess that ability. It’s ok to get frustrated, sad, put out and even angry. Honestly, sometimes I feel all those things too. I may pause or take a little linger to meet your wants and needs and I am sorry for that. 

You may not understand all of what I write, but I promise someday you will. You are a gift. Mommy and Daddy were so lucky when you arrived. You are our first. This is your title to hold always. There has been and will be moments when you won’t feel it, but baby girl know it! Always know you are loved. 

We were lucky again when your brother came along, a little boy to be loved by all. Little did we know he would flip our world upside down and teach us all how to look at the world differently. 

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Do you want to do something extraordinary?

We’re always looking for volunteers to help us serve the Williams syndrome community in Canada. Our entire organization runs thanks to the help of committed people, just like you.

Your skills can make a difference

With your help, we can run more walks, create more informational events, welcome more new families, create valuable resources and better support research and advocacy.

From a few hours at a local walk, to event planning, to becoming a provincial director, volunteering at the national level or even taking on a behind the scenes roll, like grant writing, fundraising, PR and more, if you have skills to share, we’d love your help.

Get in touch today

If you want to be part of our extraordinary team, reach out to volunteer now!

MAKE A REAL DIFFERENCE FOR SOMEONE LIVING A RARE LIFE