When Mike LeDonne’s daughter Mary (above) was born, the mood in the room went from jubilation over what doctors said was a “textbook birth” to silence when the baby didn’t cry and was whisked away.
Oddly “when we were around Mary, holding her, we felt great. She’s fantastic, she’s beautiful, we’d say. We felt better just looking at her.” But then the doctors were back with their “cold-blooded medical perspective, where they don’t see any humanity and this will be terrible.” Because Prader-Willi can be associated with chronic hunger, “you’re going to have to lock all your cabinets and she’s going to be eating your garbage,” the couple was told.
Ironically, Mary, now 10, never developed the insatiable hunger often seen in the syndrome. She doesn’t talk or see much and needs a wheelchair for long distances. But “she plays the piano for hours, improvising and creating themes she develops very purposefully,” Mike says.
So he organized the Disability Pride NYC parade, an annual march that kicks off this July 12.
The Mayor’s Office for People with Disabilities has jumped onboard as a partner and tonight Mike and a number of jazz legends he calls friends are playing a concert as a fundraiser at the Quaker Friends Meeting Hall.
Mike says he sent a parade flyer to parents of 300 children at his daughter’s school and was surprised when only three responded. “I wasn’t expecting that kind of indifference from the parents. A lot of these parents, they love their kid, but they’re not proud of their kid. I want to change that.
“I call it the Brady Bunch syndrome. People have this ideal of the American dream with four kids and the dog and the house with a picket fence and two cars and a husband who works and then the disabled kid comes in and screws it all up.” He notices some parents put a lot of energy into trying to get their disabled child to “assimilate and pass” as non-disabled.
Mike, that is music to my ears. Mary is stunningly beautiful and she reflects the love of her amazing parents. We feel the same for our beautiful little girl too. I hope you get a huge turnout for the parade.
Everyone else should click on the link on Stephanie's name and check out her wonderful blog.
Can we bring this to Los Angeles��?