Sibling act raises awareness about rare condition

Posted by Big Rat on Campus on May 16, 2014 in Rat News | Subscribe

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Bloor West Villager

by Lisa Rainford

One-time Bloor West Village residents Nathalie Wendling, her husband and two children will seize any opportunity to return to their beloved neighbourhood.

The pedestrian-friendly, community-focused area is where Wendling rented her first apartment with her spouse. It’s where they got married, bought their first home and where their children were born. But most of all, it’s where the family’s story began.

Their daughter, Melanie Glatzmayer, 12, was born with an extremely rare congenital condition called Cornelia de Lange Sydrome (CdLS), which has seen her overcome developmental delays, hearing abnormalities and vision problems. It’s a condition that continues to present challenges.

Melanie has had 14 procedures and surgeries since she was born and suffers from chronic eye infections.

Her brother Tommy Glatzmayer, two years younger than his only sibling, has been her protector. When he was in Grade 1, Tommy came home one day from school so upset he was crying. His friends had been making fun of his sister. Fed up with the teasing his sister had to endure, Tommy declared he wanted to write a book so his friends and other kids would understand what Melanie was going through.

“And, my husband and I wanted to broaden awareness about CdLS and find as many CdLS individuals who live without diagnosis or support,” said Wendling.

Since their book, the photo illustrated ‘Melanie and Tommy have two pet rats and one Syndrome,’ was self-published less than two years ago, it has sold more than 6,500 copies to become a Canadian bestseller. Since they were first asked to speak at an elementary school in Ottawa, the city they now call home, Melanie, Tommy and their pet rats have made more than 35 presentations across Canada and the U.S. and have been interviewed by various radio and TV programs, magazines and newspapers.

Tommy remains dedicated to delivering his message of acceptance.

“We can’t stop now – we are helping all of the Melanies out there,” he said.

When Tommy and Melanie return to Toronto as guest speakers at Holland Bloorview Kids Rehabilitation Hospital on Nov. 8, they’ll also make a special stop to their old neighbourhood at the High Park Gardens Montessori School on Nov. 9 at 1:30 p.m.

“It’s a great community. Every time we go back to Toronto, it’s the place we want to come back to,” said Wendling.

The family brings their pet rats, the co-stars of the book, to signings and readings. The children’s father kept pet rats when he was a kid.

Melanie and Tommy will then take their cross-Canada tour to the Maritimes next summer. More than 500 of their books will be sdonated to school libraries with a second book to be released next summer.

There are only 100 known cases of CdLS in Canada, but researchers estimate one in 10,000 people live without diagnosis. Its common characteristics include a low birth weight, slow growth, small stature, and small head size. Typical facial features include thin eyebrows, which frequently meet at the midline, long eyelashes, short upturned nose and thin, down-turned lips.

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