THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Saturday, May 13, 1995 TAG: 9505130243
SECTION: LOCAL PAGE: B1 EDITION: FINAL
SOURCE: BY DAVE ADDIS, STAFF WRITER
DATELINE: NORFOLK LENGTH: Medium: 95 lines
John Roser has a deal for you.
He wants all you garage-sale fanatics to drop by his house today. You can pick through the bargains, from clothing and knick-knacks and bikes and camping equipment to Norfolk Tides tickets, fast-food freebies and five years of free tire rotations.
He'll even wash your car for a couple of bucks, or sell you a hot dog if you're hungry.
Take him up on any of these offers and you'll be doing him a big favor: You might help his son live another day.
John Roser's youngest boy, 6-year-old Joshua, has the misfortune of having one of those diseases that few people know about, and fewer understand.
It's called tuberous sclerosis and there is no cure. And, because just 1 in 5,000 babies is born with it, tuberous sclerosis does not have a massive fund-raising organization or a weekend-long telethon over Memorial Day.
Those touched by the disease have, for a couple of years now, raised what money they can by hosting garage sales each spring. Little gatherings like Roser's will be held across the country this weekend. Their goal, nationwide, is a modest $140,000 - which doesn't buy a lot of medical research.
None of that much bothers Roser, a relentlessly upbeat Navy signalman who became the regional representative for the National Tuberous Sclerosis Association by default: There was nobody else to do it.
His involvement began three years ago, when Joshua started having seizures. ``We were at home one afternoon, just a few days after Christmas, and he started acting all jerky, and he swallowed his tongue,'' Roser said of Joshua's first attack. ``I, of all people, had to give him CPR. He went to the hospital in an ambulance.''
Tuberous sclerosis wasn't diagnosed for six months, largely because it's an ambiguous disease with a wide array of symptoms. They can range from lethargy to hyperactivity. Children may only be mildly affected, or, like Joshua, can suffer overwhelming physical and mental difficulties. People can live a long, productive life with it, or it can kill quickly.
``It's like a rainbow,'' Roser said. ``You can be at one end of the rainbow, or you can be over at the other end.''
Joshua is at the end where the colors aren't so bright.
``Back then,'' Roser said, ``when he was 3, they told us he had a 50-50 chance of living to be 5. He's 6 now.''
The disease is genetic. Roser said he and his wife have mild and differing manifestations and had never been aware of it. John Roser has cysts on a kidney. His wife, Hollis, has pale skin spots - another symptom - that are visible only under a special light.
Their older son, 7-year-old Jeremy, has symptoms and is slow for his age. Their two daughters, Alicia and Dienna, 11 and 10, have not been affected. ``They're both at the top of their class,'' Roser said. Alicia is showing a talent for the violin.
It's Joshua who faces the toughest road. Tuberous sclerosis, Roser said, is something like multiple sclerosis, but where MS attacks the muscles, TS attacks the nervous system. It's left Joshua ``really, really clumsy,'' Roser said, to the point that they dress him in a little football helmet and pads when he plays outside, so he won't get hurt.
``We just have to keep a close eye on everything he does,'' Roser said. Joshua's seizures are largely controlled by medication.
``There's progress year to year,'' Roser said of research on the disease. ``Especially in the past couple of years.'' Advances in decoding genetic structures could make it possible, soon, for prenatal diagnosis through a simple blood test.
From there, Roser said, the dream is a cure. The family stays upbeat, he said, but it has been toughest on his wife. Sometimes, Roser said, ``All you can do is just go sit in a corner and cry. But it passes.
``We're prepared for the worst,'' he said, ``but we're hoping for the best.''
The best, until science prevails, will be John and Hollis Roser and their four children, and a dozen or so friends and youngsters from the neighborhood, working all day today in the hope that they can buy Joshua a lot more Saturdays down the road. ILLUSTRATION: Color staff photo by RICHARD L. DUNSTON
Joshua Roser, left, a 6-year-old suffering from a rare disease known
as tuberous sclerosis, is shown with his father,
John Roser, center, and mother, Hollis Roser, at their home at at
3510 Orange St., Norfolk.
KEYWORDS: TUBEROUS SCLEROSIS by CNB