PITTSBURGH -- On the surface, Chris and Valerie Grady have it all: a loving marriage, a happy home and two beautiful sons.
But Channel 4 Action News anchor Wendy Bell found the Bethel Park family is struggling to live a normal life while bearing a burden that no family should have.
"My dream is a cure. A miracle. I'm a realist, but I still believe there is miracles and hopefully it will happen to us," said Chris Grady.
Their oldest son, 5-year-old Drew, was diagnosed with a rare, deadly genetic disorder called late infantile
Batten disease. Symptoms start around age 3 and ravage the body quickly, leaving children blind, bedridden and unable to communicate.
"He was hitting pitch balls overhand from distances. He had very good motor skills. And all of a sudden, he started having these seizures out of nowhere," said Chris Grady.
The blonde little boy who loved everything sports and sun and smiles soon had trouble walking, talking, eating and just being a kid.
"You have other friends and family planning and doing things with their kids, and you know your kid won't be there. At that point, you know," Chris Grady said.
Drew is incapacitated, unable to walk or talk or eat on his own. He has a feeding tube and a host of medical equipment -- and a younger brother who doesn't realize that he'll start suffering the same way in about a year, because little Trent Grady also inherited Batten disease.
No cure exists for Batten disease.
A clinical trial holds a glimmer of hope, but it's not covered by insurance.
Thanks to family and friends and neighbors, the Gradys have raised $65,000 of the half-million dollars that they need -- and that's just part of the fight. There are special wheelchairs and car seats that they need now, as Drew slips further and further away.
A fundraiser on Thursday night at the Doubletree Hotel Pittsburgh Airport will feature guest bartenders raising money for various charities. Former Steelers kicker Matt Bahr will donate his tips to the Gradys.On Friday night, an event sponsored by the Pittsburgh Association will be held at Navarra at 131 7th Street in downtown Pittsburgh. The $10 cover charge also goes to the Gradys.More information about those and upcoming events is posted at gradysallstars.com.
Children with Batten Disease often die before middle school. In the 20 weeks it took to get Drew a special walker, his condition had deteriorated so much that he couldn't use it.
"When you look at a child who has a disease where they're not going to live, it's not, 'There might be a cure.' There is no cure. They are not going to live. So you're going to take 20 weeks out of their life and my life," said Valerie Grady.
The Gradys' insurance company, Highmark, released a statement saying, "The health insurance industry is highly regulated and the timely approval of services is mandated by law. In most cases, we far exceed approval mandates. Most requests are reviewed and approved in a short time frame after all the information has been received from the ordering physician."
To help the Gradys get the medical and support services they need, Highmark has assigned the family a care manager who they can call when they need help quickly.
The Gradys know they have two incredible blessings, but their time is running out, and Valerie Grady says she'll miss the simplest things about her babies.
"Trent caught a lot of tears," she said. "Cuddle time. He's a big cuddler."
And how about Drew?
"I always remember when we brought Trent home from the hospital -- 'I don't want that Trent! Take it back!' He was funny, witty, and he was bad, and I loved it," Valerie Grady said.
The family lives each day as if it is their last, like it says on a writing on their dining room wall -- "With a little laugh. A Little Promise. A little hope."
Of the estimated 4.2 million children born in America this year, only about 100 will be diagnosed with Batten disease.
How rare is that? For comparison, roughly 5,300 children will be born with Down syndrome and about 4,200 children will have cystic fibrosis, while more than 1,000 will have muscular dystrophy.
When the little boys' bodies finally succumb to their disease, their mother will have one final message for them both.
"Thank you -- and we fought hard," a tearful Valerie Grady said.
Copyright 2009 by ThePittsburghChannel. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
