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Cup of Joe – Getting Down With Down Syndrome

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Getting Down With Down Syndrome

For more than three decades Joey Moss, 53 years old, has been the locker room attendant for the Edmonton Oilers. He is also a close pal of Wayne Gretzky and one of Edmonton’s best known celebrities.

Andrew Banar is a 25 year old entrepreneur from Kingsville, Ontario and Owner of the business he started, Group Hug Apparel, which sells tees, hoodies and other cool items (GroupHugApparel.com). He is the recipient of more awards than this space allows me to list. Through his efforts, Banar has raised more than $65,000 for various local charities.

Moss and Banar were both born with Down syndrome (DS). They are two of the most famous Canadian faces of this genetic disorder, among the 45,000 Canadians living with it.

Matt, Hazel, Nola and Stephanie Seguin on a family outing. Photo courtesy of the Seguins.

According to: KidsHealth.org, DS “is a condition in which a person is born with an extra chromosome . . . chromosomes contain hundreds, or even thousands, of genes . . . with Down syndrome, the extra chromosome causes delays in the way a child develops, mentally and physically.”

John Langdon Down is the British Doctor who, in 1866, described this developmental condition as Mongolism. It was in 1959 that the discovery of the extra chromosome was made by French Pediatrician/Geneticist, Professor Jerome Lejeune. Since the 1970s, it has been referred to as Down syndrome.

On January 27, 2012, Stephanie and Matt Seguin welcomed a beautiful baby girl, Hazel Loretta into this world. On their website: ChasingHazel.com, Stephanie courageously describes the complications she experienced during her pregnancy.

Hazel was born with DS and a few other health issues requiring surgery after her arrival. Stephanie recalls the moment she first held Hazel: “Moments later the nurse handed me this little bundle of fiery hot temper, all wrapped up in a pink blanket, with a hat pulled down just so it framed the tiny features on her precious little face. I looked at Matt — we shared a small little smile that spoke words that I will never be able to write — he looked at her and said to me, in the absolute most truthful and genuine way…‘She’s perfect.”

On November 9, 2013, Stephanie and Matt were blessed again with their second beautiful daughter, Nola. Although her arrival wasn’t without challenges, she is a perfectly healthy girl. And what a blessing both girls will be for each other throughout their lives. Stephanie knows this all too well as she acknowledges, “how important she (Nola) will be for Hazel in the future . . . something my mama heart can’t even begin to comprehend. If I focus on it I get all goose-bumpy and heart-fluttery. It’s TOO much. Entirely, TOO much!”

Joe’s column continues here