FAMILY'S STRUGGLE BECOMES A MISSION.

Byline: Eugene Tong Staff Writer

SAUGUS - As Hannah Hoslet peered gleefully into the back yard where her father was attending to the family dog, it seemed inconceivable the 6-year-old girl had suffered crippling seizures caused by a little-known genetic disorder.

``I like to play with my dogs,'' she said, bouncing on the kitchen counter.

Though playfully energetic, little Hannah has been haunted by tuberous sclerosis complex since she was diagnosed at just 8 months old. She underwent brain surgery about three years ago to control its symptoms.

``It's as common as Lou Gehrig's disease, but it's not well known,'' mother Jami Hoslet said. ``There are a lot of families in Southern California that are affected by this.''

But Jami and her husband, Jeff, a county sheriff's K-9 detective, are fighting back. They're planning to draw attention and to raise funds in the battle against the disease in the ``Step Forward to Cure Tuberous Sclerosis'' walkathon, scheduled May 16 at Bridgeport Park in Valencia.

``It's to raise awareness and money for the Tuberous Sclerosis Alliance,'' Jeff Hoslet said. The nonprofit provides family support and raises money for research on the disease that afflicts an estimated 50,000 people nationwide.

Tuberous Sclerosis Complex, or TSC, is a genetic disease that causes the growth of tumors in vital organs such as the brain, heart, skin, kidneys and lungs. The tumors can cause such serious health problems as epilepsy, heart and lung disease, kidney failure and even death. It occurs in about one out of 5,800 births, and there is no cure yet.

``There are children who have a little symptom, like an (attention deficit hyperactivity disorder) situation, to those who are in wheelchairs,'' Jami Hoslet said. ``On the long, hard journey (planning the walk) over the past 6 to 8 months, we've met all kinds of people whose lives were affected by this disease.''

The Hoslets' battle against TSC began when Hannah was just 5 months old, when they noticed her head jerking forward while on a swing.

``She started having seizures,'' Jami Hoslet said. ``Our minds were just spinning. We wanted to know what we could do to help her.''

Hannah was placed on anti-convulsant drugs and underwent a battery of tests. It took about three months before neurologists diagnosed the youngest of their three children with TSC.

``Her pediatrician literally had to turn around and grab his (medical book),'' she said. ``Most generic pediatricians just don't have full knowledge of this.''

The next two years, the Hoslets tried to learn everything they could about tuberous sclerosis and tried to control Hannah's seizures - which numbered about eight per day - with drugs and physical therapy. But the convulsions caused by a brain tumor persisted, stunting her development.

Doctors at University of California, Los Angeles, eventually proposed removing the tumors by surgery. On Sept. 28, 2000, Hannah went under the knife. A scrapbook Jami kept of the time included photos of their little girl, head shaved, with a scar running down the side of her skull.

``It hurts,'' Hannah said, wincing at the photo.

The surgery freed Hannah from seizures and allowed her to grow and learn. Though her mental development was still a few years behind other girls her age, she is catching up through special-education classes, Jami said.

``I can count to 100,'' Hannah said. ``(I like) math and reading.''

Still, some tumors remain, and new ones could form elsewhere. Hannah's health will be under constant watch until a cure is found.

``That's always the scary part,'' Jami said. ``At any time those tumors can start going off.''

But the Hoslets are savoring every moment they have with Hannah, who with their son Nicholas, 10, and daughter Heidi, 8, can be a handful.

``There are days when it's hard,'' she said. ``When you get frustrated; you've got to be thankful that she can have an argument or have a fight (with her siblings).''

The Step Forward to Cure Tuberous Sclerosis 5K walk, sponsored by the Los Angeles County Sheriff's Department and the Tuberous Sclerosis Alliance of Los Angeles, is scheduled May 16 at Bridgeport Park. Call [phone] or visit www.tsalliance.org more information.

Eugene Tong, [phone]

eugene.tong(at)dailynews.com

CAPTION(S):

2 photos

Photo:

(1 -- color) Hannah Hoslet, 6, looks at a photo album in her Saugus home with sister Heidi, 8, left, and brother Nicholas, 10.

(2) Hannah's parents, Jeff and Jami Hoslet, have gone through the ups and downs of their daughters tuberous sclerosis complex.

Hans Gutknecht/Staff Photographer