THE UPBEAT
A 10-year-old Manotick boy makes his family proud,
When he was six years old, Tommy Glatzmayer came home from school in tears. Other students were making fun of his older sister, Melanie, who suffers from a rare syndrome that affects everything from her appearance to her ability to walk, speak and hear, and Tommy didn’t understand why.
“He loves her,” said their mother, Nathalie Wendling.
“In his world, he wonders why other people don’t love her as much as he does. He was devastated.”
So he took things into his own hands — just not in the way you might expect.
With the help of his mother, Tommy wrote a children’s book, titled Melanie and Tommy Have Two Pet Rats and One Syndrome, to help teach others about his sister’s battle with the syndrome.
Self-published in 2010, the book has now sold more than 7,000 copies and Tommy — with Melanie by his side every step of the way — has become a local celebrity, appearing at numerous book signings, TV interviews, and other speaking engagements to spread the message of courage, love and acceptance.
“I still don’t think he understands the extent of the impact he’s had,” Wendling said.
“One time he came up to me and said, ‘Why do people want to shake my hand and not let go?’
“It’s a big step for him to speak up about his sister and tell the world that she’s disabled and it’s OK.”
For his efforts, Tommy, who’s now 10, was awarded the Queen’s Diamond Jubilee Medal Friday at Manotick Public School, becoming one of the youngest recipients of the award commemorating the 60th year of Queen Elizabeth’s reign.
“I’ve never received a really big medal before so I’m pretty honoured,” he said. As he should be. Since the book was published, Tommy said students at the school have changed completely.
“Now they’re really nice to her,” said Tommy, who is working on a second book with his mom. “And they actually understand how to play with her.”
Melanie, 12, was born with Cornelia de Lange Syndrome (CdLS), a rare disorder characterized by developmental delays, distinctive facial features and other system abnormalities, according to the Cornelia de Lange Syndrome Foundation.
It’s believed one in 10,000 people suffer from CdLS, according to the foundation, but few are ever diagnosed. There are only 100 known cases in Canada.
It took three hospitals and as many years for doctors to diagnose Melanie with CdLS, but Wendling and her husband, John, knew something was wrong days after she was born.
“And by the time she was four months, food was poison to her,” Wendling said. “She was just starving herself because it was so painful.”
Fourteen major procedures later, Melanie is doing much better.
She still has trouble completing sentences and explaining feelings and pain, but Wendling said, “She’s having a very good year.”
As for Tommy, he may not have known what was coming when he decided to write that book, but he did know one thing.
“He said, ‘ Don’t worry mom, everybody’s going to love the book.’ I was just petrified, but I’m glad he was right.”
And so is Melanie.