Boy pens book about rare syndrome to fight bullying, raise awareness

Posted by Big Rat on Campus on Sep 30, 2014 in Rat News | Subscribe

Tommy Glatzmayer was just seven years old when he became an author.

He wrote a book about his sister Melanie who has a rare syndrome called Cornelia de Lange, which results in low birth weight, small stature and small hands and feet.

“He wanted to teach his friends a little bit about Melanie’s syndrome, but he wanted to entertain them at the same time,” says Tommy’s mother. Nathalie Wendling.

In putting pen to paper, Tommy also wanted to pass along a message after coming home from school crying because his sister was being teased.

“To stop making fun of Melanie’s syndrome,” says Wendling.

Shortly after being published, Tommy and his family were asked to present the book – Melanie and Tommy Have Two Pet Rats and One Syndrome – to a school in Ottawa and they have been spreading their message of acceptance ever since.

The family has made about 50 presentations to promote awareness of Cornelia de Lange Syndrome, a disorder that has only been diagnosed in 100 Canadians.

When Tommy and his sister visited a school in New Brunswick on Tuesday, Kimmie Bevans and her daughter Jayden were the guests of honour.

Jayden is the only confirmed case of CDLS in New Brunswick.

“I know that she’s going to live a full life and she’s going to be a very happy little girl,” says Kimmie.

The meeting was a special one for Melanie’s mother.

“It’s so exciting to see someone who has CDLS as well, because there’s so few in Canada and when you meet someone for just that moment, Melanie is the same as someone else,” says Wendling.

Thanks to Tommy’s book, that acceptance applies to school as well.

“Every kid thinks Melanie’s awesome, she’s a good kid and at my school everybody’s changed,” says Tommy.

To make their presentation a little more memorable, Tommy and Melanie included other characters from the book – their pet rats.

“I learned that everybody can be different, but you should never judge someone because they have a disease or syndrome,” says student Josh Jamieson.

In 2012, Tommy was selected by the Governor General to receive the Queen’s Diamond Jubilee Medal for his work in raising awareness about his sister’s syndrome.

With files from CTV Atlantic’s Jonathan MacInnis

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