September 23, 2019

BY DEEANNA ROLLINS dr-see-me-1-2

See Me. See them. See people for who they are. It’s important to look past what someone looks like on the outside.

That is exactly what the See Me. project is doing. It’s shining a light on people who are considered different or special.

Hilary Gauld-Camilleri got pulled into this project a year ago not knowing what to expect; she ended up loving it and taking it to a level that no one ever expected, but many anticipated.

The Waterloo Regional Down Syndrome Society (WRDSS) started this project as a way to help showcase people with Down syndrome and help them to feel important. The calendar, called 31 days, 31 faces, is how it started. Through time with the models and time editing the photos,

Hilary realized that the project wasn’t just about shining light on people, young and old alike, with Down syndrome, but rather seeing them from the inside out. She wanted the project to be more than just photographs, and thus she came up with the idea of See Me. This is the fifth year for the 31 days, 31 faces calendar and the first year for the See Me. project.

October is Down Syndrome Awareness Month, and starting on the 1st, 52 different faces were posted on Facebook for the See Me. project.
Ranging in age from four months to 44 years old, all of the people who were part of this project had a different story to tell, and wanted the world to hear.

“Let’s minimize his differences and maximize his sameness while simultaneously respecting his uniqueness,” said Curt Beattie, a father whose son, Chase, is in the project.

The project doesn’t end here though. These people deserve to be seen and their stories deserve to be heard year-round, and they can be with the new calendar being made and sold.

Another one of the 52 faces is Rene Ruppe, who is one of the most inspiring children I have ever met. She was so enthusiastic; an absolute charmer. With her back walk-overs and handstands, her outbursts of the most contagious giggling and her overall exuberance, the only thing that makes her different from any other 12-year-old girl is the fact that she was born with Down syndrome.

Nicholas Popwich, a member of the Voices of the Table Committee of the WRDSS, once said, “The world needs variety in every sort of living thing. It is the same with people … I would want to say to the people: Change your definition of ‘normal.’ Make it bigger because we all fit, we all belong, we all contribute.”

Living with someone who has Down syndrome is one of the most difficult yet rewarding things anyone could ever dream of. My 57-year-old uncle has the genetic disorder, making me connected to this project. He just recently moved into my home, and I never expected it to be as endearing as it is.

It is difficult because it can sometimes get frustrating when it takes him 20 minutes to do something it takes me five minutes to do. It is difficult because I have to ask him to say the same thing six or seven times because I can’t always understand what he’s saying. It is difficult when I see people look at him like he’s some sort of monster, when in reality, he’s more special than they could ever even consider being.

It is rewarding in a sense that if I ever need anyone to make me smile, he’s there. Rewarding in a sense that he doesn’t know sadness the way that you and I know sadness, he has such a positive outlook on life. Rewarding in a sense that he knows he’s different and he owns the things that make him different. Rewarding in a sense that he’s not afraid to say hi to anyone. He knows no weakness.

The See Me. project has brought with it a huge weight; a weight that has been lifted off of many shoulders, mine included. Rene’s mom,

Bernadette, has felt this weight lift off her shoulders as well.

“I was so excited to hear that Hilary was taking this project a step further,” she said. “She doesn’t have a child with Down syndrome, and when people have seen what she’s done, maybe they will be able to understand and see my daughter like she does.”

The 52 faces posted in the last 31 days will now shine a little brighter. Their moms and dads will have something they can be proud of as parents. The viewers will have a little bit of a wider eye and a stronger heart toward people with Down syndrome.

To see this project in its entirety, visit www.facebook.com/WaterlooRegionalDSS or www.facebook.com/ONEFORTHEWALL.

What is Down syndrome? 

Down syndrome, also known as trisomy 21, is a genetic disorder caused by a difference in the genetic makeup of a human being. They have a little bit more than we do; they have an extra (or part of an extra) 21st chromosome. This disorder is connected to things like stunts in physical growth, differences in physical features (like facial characteristics), and intellectual disabilities. It is one of the most common chromosomal abnormalities.

Typically, the parents of a person with Down syndrome are genetically, what is considered, normal; the extra chromosome is completely random, as far as science can tell, and although science has come a long way, there has yet to be a cure found for Down syndrome.

In Canada, approximately one in every 781 births result in the birth of a child with the genetic disorder, which means there are about 45,000 Canadians living with Down syndrome right now. That is less than one per cent of the total population.

Down syndrome goes back as far as AD 500, according to paintings and drawings that have been found that exemplify the prominent facial features of someone with the genetic disorder. It was fully described by British doctor John Langdon Down in 1862 and was officially identified as trisomy 21 in 1959.

Throughout time, the treatment of people with Down syndrome has greatly improved, so much so that in the last 33 years the age expectancy of people with Down syndrome has increased from 25 to 60 years.

Committees, like the Canadian Down Syndrome Society (CDSS) have made it easier for parents or guardians to get the help and information they need to care for a child with the genetic disorder.

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