Dad fights for 2 sons born with rare fatal disease
Imagine tucking your two boys in bed every night knowing that neither of them is likely to live long enough to graduate from high school. It's a daily reality for Jeff and Deena Leider of Garfield, N.J.
(MCT) HACKENSACK, N.J. − Imagine tucking your two boys in bed every night knowing that neither of them is likely to live long enough to graduate from high school. It's a daily reality for Jeff and Deena Leider of Garfield, N.J.
Their sons, Jason, 6, and Justin, 3, were born with a rare genetic disease, Hunter syndrome, in which their bodies fail to produce a key enzyme needed to maintain healthy cells. Despite costly enzyme replacement therapy, their cells don't dispose of toxins, and as they grow, their organs swell and their bodies steadily shut down. Most kids with Hunter syndrome don't make it past 15.
The boys were busy coloring with crayons while their father explained their disease to students at the Fortis Institute in Wayne, N.J., last week.
"Every day, when I kiss them goodnight, I leave their room and get choked up knowing that we're one day closer to the final chapter," Leider told the students. "But I don't have time to cry right now. As their daddy and their provider, I can only fight for them."
Leider, a landscaper by trade, spends as much time as he can spreading the word about Hunter syndrome, which was first diagnosed in 1906 but is exceedingly rare. There are only about 300 cases nationwide, and his two boys are among four cases reported in New Jersey, he said.
He's working with state Sen. Nellie Pou, D-Hawthorne, on a bill that would require that all newborns be tested for Hunter syndrome. Only one state − Texas − requires testing, he said.
Leider, with his wife, has created a foundation − Let Them Be Little X2 − with its own website to raise money and awareness. Two years ago he testified before Congress and helped persuade the Obama administration to cut red tape involving clinical trials so that experimental drugs to combat genetic illnesses could be put on the market more quickly. He's written a soon-to-be-published book, "Our Journey Home," which he hopes will raise money.
The students at Fortis donated $500 to Leider's foundation, the proceeds from a recent fundraiser.
Leider said his first-born son, Jason, seemed like a healthy kid at first − except that he had chronic ear infections and his nose kept running. At age 3, Jason's preschool teacher noticed that the boy kept rolling his tongue.
A blood test revealed Hunter syndrome; the Leiders then had Justin tested, and he proved to have the disease, too.
Hunter syndrome strikes only boys, and Jason and Justin have all the telltale signs of the disease: their hair is coarse and their noses are flat. The boys look like twins − all Hunter syndrome children look alike − and Jason is already developing a paunch due to swelling of the abdomen.
There are two forms of the disease. A mild form, which afflicts only 10 percent of victims, responds better to enzyme replacement therapy. Those who have it can live into their 50s. The more severe form, which afflicts the other 90 percent, is ultimately fatal to children.
Aside from weekly enzyme replacement therapy, there are endless maladies: chronic diarrhea, carpal tunnel syndrome, enlarged hearts, respiratory problems, and swelling of joints. At 6, Jason has already stopped developing intellectually and is becoming less verbal. His brother, Justin, is right behind him, his father said.
Both boys knew that Christmas was coming as their father was speaking to the Fortis medical students. Asked what he wanted for Christmas, Jason didn't hesitate: "a rocket ship!" Justin also knew what he wanted from Santa: a set of Hot Wheels cars.
Despite the ordeal, there have been extraordinary moments, like the trip to Dallas earlier this year to see the Giants play the Cowboys, sponsored by the Make-A-Wish Foundation. Jason was named the Cowboys' honorary team captain, and the team's two star receivers, Dez Bryant and Garfield native Miles Austin, pledged to make an "X" sign every time they scored a touchdown as a nod to the Leiders' foundation.
"Growing up in Elmwood Park and living in Garfield, I know a lot of die-hard Giant fans," Leider said. "Being a Giant fan usually means you hate the Cowboys. But even my Giant fan friends say they hate the Cowboys a little less because they did that."
And of course, Jason, too, is now a Cowboy fan for life.
The foundation's website is letthembelittletrustfund.com.
(c)2012 The Record (Hackensack, N.J.)
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