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DEVASTATING DISEASE CAN'T SIDETRACK HOPE.

Byline: DENNIS McCARTHY

``Hallervorden-Spatz Syndrome (HSS) is a rare, devastating disease, the cause of which is unknown. Doctors believe it affects less than 500 people in the world.''

- HSS Association fact sheet

Two of them live over on Superior Street in Northridge. A couple of wonderfully bright, vibrant sisters named April and Tracie Flinn.

April, 19, is called the girl with the golden smile by her counselors in the special education department of Monroe High School in North Hills.

``She is the most up person I've ever been around, always smiling and keeping us laughing,'' says counselor Kathryn Hack.

When April's stepfather, Mark Forstall, wheels her into the living room to sit by her mother, Debbie, Thursday afternoon, you can see immediately what Hack is talking about.

The room lights up as she smiles and throws out her arms for a visitor she has never met before to give her a hug.

Forstall, a mechanic for the Metropolitan Transportation Authority, excuses himself and goes back into the bedroom to wheel out her 17-year-old sister, Tracie.

It's only hours before April will be going to grad night, followed by an all-night trip to Disneyland. But before that, she will receive a silver medallion at the school's academic awards ceremony for carrying a 3.5 grade point average through high school.

Her body may not be working right because of this rare, genetic disease, but there's absolutely nothing wrong with her mind.

Tracie is two years behind her in the special ed department at Monroe. ``I'll be graduating in two years,'' she says in a garbled voice that her mother has to translate for a visitor.

April smiles and rolls her eyes at her sister. ``Maybe,'' she says in the same garbled voice - leaning over from her wheelchair, and giving her younger sister a gentle pat on the arm.

Sibling rivalry - even a devastating rare disease can't sidetrack it.

This trouble with talking was one of the first signs Debbie noticed that something was wrong, when her seemingly perfectly healthy little girls were about 8, she says.

It started with a stutter that grew into what you hear now, she says - a mumble of words only a mother can understand.

With the stutter soon came the loss of control of their arms and legs, and the onset of spasms that make it impossible for the girls to ever sit still.

And no one - not the doctors or medical researchers trying to isolate the gene that causes iron deposits in the brain, the main feature of HSS - can tell them exactly why, let alone offer a cure.

``We tell people our girls have HSS and people just look at us with this blank stare,'' says Debbie, who works in the disability resource office at California State University, Northridge.

``They've never heard of it, let alone have a clue what it is. But, then, neither did I before it struck my girls.''

Patty Wood, HSS association president in San Diego, says Dr. Susan Hayflick of Oregon Health Sciences University is close to isolating the gene that causes HSS, but there is still a lot of costly research ahead of tracking it down.

``It's like knowing a house is in a certain city, but still not knowing the street or house number,'' she said. ``We know the gene's general location, but not the specific address.''

That will take more time and additional research funding on a rare disease hardly anyone knows exists. That is why Debbie and her girls are coming forward now.

We should know, they say. Time is not a luxury these girls or any of the children HSS strikes can count on.

They know they are racing the clock for a cure so they can have that future they envision for themselves - April in child development and Tracie working with animals in a veterinarian's office.

But you have to hedge all bets when your girls have a disease for which there is no known cure, Debbie says.

Recently, the wonderful Make-A-Wish Foundation interviewed Tracie, and granted her wish to visit Disney World in Florida. The whole family, including half-sister, Taylor, 6, who does not have HSS, will be going in August.

But with the excitement of this trip also comes the reality of why it is being granted.

``I had to explain to Tracie what the foundation was all about,'' Debbie said. ``That's when she asked me if she was going to die.

``I told her, honey, we're all going to die,'' Debbie said.

``The girls understand. They're fighters. With our help, they're going to live their lives to the fullest for as long as they have, just like any child.''

And, just like any mom of a high school graduate this month, Debbie Forstall waits anxiously Friday morning for April to come home from her all-night visit to Disneyland with the other graduates of Monroe High School this year.

She and Tracie want to hear all about it.

More information on HSS is available on the Internet at www.hhsa.org or by calling the association at (619) 588-2315.

CAPTION(S):

Photo

PHOTO Sisters April Flinn, left, 19 and Tracie Flinn, 17, have a rare disease.

Charlotte Schmid-Maybach/Daily News
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No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1999, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Publication:Daily News (Los Angeles, CA)
Date:Jun 13, 1999
Words:869
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