COURAGE & GRACE; AT 16, DENNY SIM IS DEFYING PROGERIA, AN ACCELERATED AGING DISEASE.

Byline: Luz Villarreal Daily News Staff Writer

Before Denny Sim steps off the curb, his father rushes across the street, his arms outstretched.

He reaches for the backpack weighing on his son, lifting it off the teen-ager's tiny frame, and slipping his own arm between the straps. Then, as he does every day, he guides his only son across the street to the family car.

Denny, a sophomore in the body of an 80-year-old man, had finished another day at Monroe High School, where going to class makes him feel normal.

At 16, Denny already has outlived his life expectancy. At 16, his grace and courage have exceeded the expectations of friends, relatives and doctors.

He is living with progeria, an extremely rare and terminal disease, which rapidly ages children and usually leads to their deaths by 13.

Denny stands 4 feet tall and weighs about 40 pounds. A chest scar above the collar of his white T-shirt reveals a recent coronary bypass to aid his aging heart.

Denny is open about the disease that strikes one in 4 million children. He can tell you everything you want to know about progeria. When it was discovered, who first studied it - and its harsh realities.

He taught himself while researching a report for his biology class. The information fits on one page because very little is known about the disease.

``It's a disease where you age faster than normal kids,'' he said. ``You lose your hair. It doesn't affect your mental capabilities. There's not much study about it because it's so rare. They should try to raise money for research. Most kids die when they are 12 to 14. Some die as young as 7. There is no cure.''

Since 1886 when progeria was discovered, more than 100 cases have been identified. There are fewer than 30 documented active cases.

Doctors can't predict who will be born with progeria. Most cases are diagnosed in a child's first or second year.

``It's an accident of nature at the time of conception,'' said Dr. W. Ted Brown, the nation's leading progeria researcher and a world renowned human geneticist.

Brown, who chairs the Department of Human Genetics at the New York State Institute for Basic Research on Staten Island, said the disease is believed to be a sporadic dominant new mutation not inherited from either parent.

``The disease is a hard one to study from a researcher's standpoint,'' said Brown. ``It's hard to find a gene of the disease. They never have children of their own.''

Research funding has been hard to come by because it's so rare and difficult to study, Brown said.

Denny was apparently normal when he was born in Anyang, South Korea, in 1981. He weighed just under 7 pounds. But within his first year, his parents noticed his skin began to harden. They took him to several doctors. They ran dozens of tests and diagnosed a skin condition.

When Denny was 2, the Sim family moved to the United States to seek better medical treatment. Doctors diagnosed his disease. But still, nothing seemed to help. As he was learning to walk and talk, Denny was growing old fast.

``My parents stopped taking him to the hospital after a while,'' said Jane Sim, Denny's 21-year-old sister. ``They felt they were just running experiments on him. With all the needles and all the tests, my parents felt they were hurting him more than they were helping him.''

Denny has never met another child with progeria. He's seen some on television talk shows.

Most people with progeria have similar features, such as dwarfism, baldness, a pinched nose, a large head with a small face, prominent eyes and aged skin. The most common medical problem is cardiovascular.

Denny began feeling chest pains in September. It started slowly. He played shortstop in a Little League Baseball team the past three years.

He hoped to try out for his high school tennis team this year but his heart wasn't strong enough. The pains became more frequent. Medications didn't help.

On May 1, he underwent open heart surgery at Childrens Hospital of Los Angeles - an uncommon operation for children, even for children with progeria.

Denny's doctors are hopeful this operation will add years to his life because it was done before any major damage to his heart.

Staying active

To keep healthy, Denny keeps a miniature 20-pound barbell set in his bedroom. He uses a 50-pound bag of rice as a makeshift weight bench. He walks around his block and is starting to play tennis and badminton again.

On his bedroom walls are posters of tennis stars Andre Agassi and Pete Sampras. His baseball hat collection includes that of the Dodgers, the Colorado Rockies, USC, Monroe High School and his favorite, UCLA.

Denny wants to be a Bruin after high school. It's the college his sister, Jane, attends. She is a biology major and wants to become a pediatrician.

``My brother had a lot to do with that,'' she admits. As a child, Jane would go to the hospital with her brother and parents to help translate.

Another sister, Helen, attends Wheaton College in Norton, Mass. She is majoring in religion and classics. As a little girl, she served as Denny's protector.

``Little kids used to tease him a lot,'' Helen said. ``They used to take off his hat. I would get into a lot of fights with other kids because of that. Once he came home crying, holding his stomach. Jane's first instinct was, `Are you OK?' My first instinct was `who did this to you.?' ''

The Sims' three-bedroom Granada Hills condo is sprinkled with photos of Denny. They show him receiving awards for community volunteer work, grade school portraits and family outings.

His mother, Anna Sim, carries Denny's report card in her purse. She shares his 3.8 GPA with perfect strangers and a school newsletter naming Denny ``Student of the week'' at Monroe High.

When asked more about Denny's future, his parents begin to cry. So does Jane. Helen, 19, begins to translate for them.

``We believe in God and we trust in him,'' she said. ``You don't know, anyone can go at any time. Every day is special for us.''

Anna Sim said Denny wants people to know about the disease.

Denny did his report on the disease with Edward Herrera, a classmate.

``I didn't know anything about it before,'' said Herrera, 16. ``I didn't want to know. I thought it would make us uncomfortable. The more I learned, the more I felt like everything inside me was messed up because he's not going to live forever. But he acts like a regular person. He doesn't feel sorry for himself.''

Denny said he wants people to know children with progeria may be old physically, but they are anything but that in their spirit and mind.

``We're intelligent, active,'' he said. ``We want to live a normal life.''

Brings out the best

At school, Denny is never alone. Between classes, he is usually encircled by a group of Korean-American boys. They dote on him in a protection fashion. During lunch, one will sneak to the front of the lunch line to buy Denny a sandwich. Another one shares his chips with Denny. When he's done, one of his friends throws his trash away. Sometimes they carry his backpack.

English teacher Marti Sutherland said Denny brings out the best in people.

In her class, it's not unusual for students to walk in at the beginning of the year with a chip on their shoulder.

``Many of them start the year with attitudes, `I'm not going to read this book because I have a bad home life,' '' she said. ``When (Denny) first came into my class, I thought, `Oh boy, he's so frail. What kind of problems will he bring? What kind of special care will he need?' ''

But Denny was anything but a problem.

``I realized in the first two weeks, he always smiled,'' Sutherland said. ``He's never unhappy. I've never had a child who can impact an entire class. It's because of the respect for this boy and their awareness of the courage and grace he displays on a daily basis. These kids respect learning more because they see this kid coming in day after day. They know he may not live to turn 25.''

As far as Denny is concerned, he's a normal kid with health problems, Sutherland said.

And many of the students at school see him that way - normal.

It is evident in the classrooms and in the hallways where the pint-size sophomore walks through towering crowds of teen-agers without turning many heads.

But there are a few who do notice.

``What's up D?'' said Vinny Walker, as he taps Denny's baseball cap in a hallway. Walker, 17, shared an algebra class with Denny earlier this year.

``He's cool,'' Walker said. ``I don't know what he has. I really don't care. I treat him like anybody else.''

Later that day, Denny catches Mark Gabrielle's attention.

``Hey Denny,'' the 19-year-old said. ``How are you feeling?''

The senior student, who shared a Spanish class with Denny last semester, said he and other students sent Denny a ``Get Well Soon'' card and a Monroe High School baseball cap when he was recovering from his surgery.

``I feel for him,'' he said. ``I want to make him feel like he's a regular person.''

There for others

Araceli Maximo shares four classes with Denny and because of that, they often talk on the phone after school to compare classroom notes.

``Denny's always joking and smiling,'' said Maximo. ``He'll always try to help you out. Like I had problems at home and he would notice I was sad. He would talk to me. He'd be there for me.''

When the school bell rings at the end of the day, she walks with Denny to the edge of the school grounds. Before she catches her ride home, she turns to him, ``Are you going to call me tonight?''

``Yeah,'' says Denny, smiling, then turning for his father, James, across the street. ``She helps me with my Spanish homework.''

CAPTION(S):

5 Photos

Photo: (1--color) Denny Sim, 16, walks to lunch with friends at Monroe High School. Denny's progeria has accelerated his body's aging.

Bob Halvorsen/Daily News

(2--color) Doctors check Denny Sim's progress at Childrens Hospital of Los Angeles.

Myung J. Chun/Daily News

(3--color) Denny Sim's cheery attitude, above, inspires classmates like Edward Herrera, working on a project with Denny, right.

Bob Halvorsen/Daily News

(4--color) Sixteen-year-old Granada Hills resident Denny Sim, whose body has been prematurely aged by progeria, awaits a checkup at Childrens Hospital of Los Angeles, where he underwent open heart surgery May 1.

(5--color) His sister, Helen, left, and his mother, Anna, read a card given to Denny Sim by students at Monroe High after his heart surgery.

Myung J. Chun/Daily News