PARENTS SEEK HELP FOR ILL BOY.

Byline: Enrique Rivero Daily News Staff Writer

For more than eight months Scott Koss and Shannon Smith have seen the health of their 2-year-old son, Steven Koss, deteriorate as the youngster's blood cells have slowly dwindled away.

The youngster has severe aplastic anemia, a condition marked by dangerously low levels of white and red blood cells and platelets. The condition can be treated with a relatively new type of transplant, but several drives have failed to turn up a suitable donor. Adding to their troubles, the couple may have to come up with the $300,000 to pay for the transplant and post-operative care.

Now the couple is turning to the public for help.

``Every day we prolong it is another day that's gone - he can't wait around,'' said Scott Koss, 30. ``He can have six months worth of transfusions and then the body rejects the blood - we're at about three months now.''

The couple's ordeal began in early January, when Steven came down with the first of an on-going series of viruses.

``He's had virus after virus after virus since December,'' said Smith. ``But the doctors didn't do any blood tests - they said it's normal, it's just a cold, it's just a normal virus.''

The doctors repeatedly told the couple that further tests were unnecessary. Children get sick all the time - there was no need for alarm, doctors told Koss.

But Steven never got any better. To the couple, his illnesses blurred into one long sickness marked by 104-plus degree temperatures and other symptoms.

``He was always sick - he wouldn't get any better,'' Koss said.

Finally, in early May, the couple noticed bruises on the boy's legs and strange red dots over his abdomen. ``I thought he was coming down with a rash, so I took him to the doctor,'' Smith said.

That was the morning of Friday, May 3. ``They drew his blood and Friday evening we got a call from the doctor's office about 10:30 at night and they told us we need to take Steven to UCLA, because his platelets were low,'' Smith said.

The next morning they took the child to the university pediatric unit, where the boy underwent several tests, Smith said. At first, doctors couldn't find any white blood cells, only red cells, and initially leukemia was suspected.

Subsequent tests detected that all the youngster's blood cells - red and white as well as the platelets - continued to decline.

On May 23 doctors finally identified the youngster's condition as severe aplastic anemia. ``He was diagnosed the day after his second birthday,'' Smith said.

There is hope for the youngster. The condition can be treated with a stem cell transplant with umbilical cord blood or bone marrow. Now the couple has to find not only a matching donor, but the cash for the procedure.

The couple's insurance company has said it will not pay for an operation because it is still considered experimental, Koss said.

Meanwhile, they have appealed for help to the Children's Organ Transplant Association Inc., a Bloomington, Ind.-based charity that organizes fund-raisers to pay for transplants and which numbers singer-songwriter John Mellencamp as an honorary board member.

If a donor cannot be found, the couple may have a second child who can serve as donor, he said.

``I just wanted one baby in life, but having two is worth it to save his life,'' Koss said. ``Obviously it's a pretty good chance that the baby will be a perfect match for Steven. There's a 90 percent chance of that - that's what UCLA told us.''

HOW TO HELP

Children's Organ Transplant Association is looking for volunteers to help run a local fund-raising campaign to help Steven Koss. An organizational meeting is scheduled for 7 p.m. Thursday at the Elks Lodge, 158 Conejo School Road, Thousand Oaks. Monetary donations can be sent to Home Savings of America, 148 W. Hillcrest Drive, Thousand Oaks, CA, 91360, or taken in person to any branch office. Checks or money orders should be made payable to ``COTA for Steven'' and account number 1450264468 should be written in the memo space.

CAPTION(S):

Photo, Box

Photo: (1--Color only in Conejo edition) Scott Koss an d Shannon Smith are seeking the public's aid for their son, Steven Koss, 2, who suffers from severe aplastic anemia.

Jeremy Greene/Special to the Daily News

Box: (Conejo edition only) HOW TO HELP (See text)