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Jeff Leider and his sons, Jason and Justin.

As a parent, the one thing I wish for my kids is that they grow up to have a relatively normal life. I think most parents – regardless of their aspirations for their own children – would want the same thing.

For Jeff Leider and his wife, Deena, that might never happen. The Leiders’ sons, Jason and Justin, were diagnosed with one of the world’s most uncommon genetic diseases, Hunter syndrome, a condition that literally batters children’s bodies, leaving them with swollen internal organs, bloated faces and possible dementia before they are old enough to drive a car.

Doctors estimate that only 1,500 people in the world suffer from it, with between 250 and 400 in the United States.

Here’s a quote from Jeff in a recent story in The (New Jersey) Record:

“All of my dreams as a parent and all the fantasies that I had as their daddy just went out the window,” Jeff added.

So far, there is no cure for the syndrome. There are some experimental medications, but they can cost as much as $300,000 a year. For each child. In March, according to The Record, the Leiders spent $4,000 in health care costs beyond what their insurance covers.

The New Jersey Landscape Contractors Association has set up an online donation form, and in two days have raised more than $4,000. If you can, please donate here.

Written by CBOWEN@GIE.NET

April 7th, 2011 at 3:00 pm