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.
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.
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.
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).
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.Donate Now
When Alma was a baby, a friend created this lovely video of our family. Enjoy!
Interesting Is Everywhere – “Alma” from Sugino Studio on Vimeo.