Family shares story of living with a rare condition

Posted by Big Rat on Campus on Jul 11, 2012 in Rat News | Subscribe

At eight years of age, Tommy Glatzmayer is two years younger than his sister Melanie, but he has always been protective of her.

Melanie was born with a condition that sets her apart from other kids her age. Born with Cornelia de Lange Syndrome (CdLS), a congenital condition, Melanie has had several operations in her short life and has had to overcome developmental delays, hearing abnormalities and vision problems.

“In grade one, Tommy came home one day and cried because his friends were making fun of Melanie,” said the children’s mother Nathalie Wendling and a former Bloor West Village resident. “He decided he wanted to write a book so his friends would understand his sister better.”

The self-published photo-illustrated book called, ‘Melanie and Tommy Have Two Pet Rats and One Syndrome,’ was released in August. It has since sold 3,000 copies and has been garnering rave reviews.

On a quest to find more kids out there with CdLS, Wendling, her son and daughter have been visiting schools throughout Ottawa and the Greater Toronto Area speaking to students and doing book readings. They’ll be coming to Chapters at the corner of Runnymede Road and Bloor Street West, Saturday, Jan. 29 from 12:30 to 2:30 p.m.

For three years, Wendling and her husband John Glatzmayer had no idea what was ailing their eldest daughter, Melanie – nor did the countless doctors they took her to see, but the couple certainly knew something was horribly wrong.

Born in April of 2000, Melanie weighed just five-and-a-half pounds and within a week was choking as many as three times a day. Her condition only worsened when she and her mother were sent home from the hospital. Sleeping only for half-hour intervals, Melanie would choke until Wendling propped her up into a sitting position. Her crying bouts lasted as long as 36-hours. Afterward, she would vomit before the cycle would begin again.

Wendling and her husband were desperate. They gave their baby several different kinds of milk, 25 types of pacifiers, tried dozens of sleeping positions, countless eating strategies and various medications, including antacids, but to no avail.

The former Bloor West Village residents, who now reside in Manotick, near Ottawa, would rush their baby gasping for breath to the hospital time after time. When Melanie was a mere four months old she stopped eating and drinking entirely. She had made the connection that eating and drinking caused her such pain and grief that she gave up, said Wendling.

Doctors inserted a feeding tube through her nose and into her stomach. Her team of physicians agreed to try a different strategy called Endoscopic fundoplication – a surgical method used typically for treating gastro-esophageal reflux disease. It turned out Melanie’s stomach was the size of a walnut, but the opening at the top of the stomach was so large it wasn’t keeping any food down. Melanie had not been choking on saliva, it was undigested food.

Three years after she was born, Melanie’s parents finally got a diagnosis. They daughter this rrare condition CdLS.

“There are only 100 known cases in Canada,” said Wendling on the phone from her Ottawa area home, “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.

As for Melanie, her characteristics were all really mild, said Wendling, making it difficult to pin-point the syndrome. Another common aspect is absent or delayed speech, hearing abnormalities and vision problems, which Melanie’s parents had corrected with hearing aids and glasses.

The family brings their pet rats, the co-stars of the book, to signings and readings. Wendling said her husband kept rats as pets when he was growing up.

“When we got married, he convinced me to get rats. I was terrified at first,” said Wendling laughing.

However, they are smart animals and have been therapeutic for Melanie, who holds her pet rat every night and every morning. If she has a tantrum, it’s her pet rat who calms her down. When Melanie is sick, the pet rat will watch TV with her all afternoon.

Tommy and Melanie will make an appearance at Taddle Creek Montessori, 39 Spadina, at 1 p.m. Thursday, Jan. 27 as well.


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Article source: http://www.insidetoronto.com/news/local/article/929474--family-shares-story-of-living-with-a-rare-condition

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