Malia Concepcion, 3, who suffers from a severe blood disorder called chronic autoimmune neutropenia, still finds energy to clown around and give sister Kayla, 8, a playful hug.

Good days and bad

An Oahu 3-year-old faces
trying times as doctors
struggle to treat her disease

Malia Concepcion is like most 3-year-old girls. She likes Barbie dolls, brightly colored balloons with cartoon characters -- Tweetie Bird is a favorite -- and her pink slippers, which are maybe a bit too large for her 2-foot-9, 26-pound body.

Fund-raiser for Malia

Starring Solanna, O-shen, Hot Rain, Cross Point, Ghost Band, Night Life and others

Where: Kapono's, Aloha Tower Marketplace
When: 7 p.m. Saturday
Tickets: $8 advance, $10 at the door

The brown-eyed girl with twinkling doe eyes and a button nose even likes the nurses and doctors at Kapiolani Medical Center for Women & Children ... even when they have to inject medicine through a tiny hole in her chest.

That's a specialness Malia has had to face since she was 4 months old, sentencing her to a young life of no visits to Chuck E. Cheese or a movie theater or playground with other children. The injections are part of a regimen followed when Malia's temperature spikes to 105 degrees for hours from a sudden bacterial infection. Her last birthday party had to be restricted to a few special guests in good health.

Years before the SARs scare began, Malia had to wear a germ mask because, for her, catching a cold could be a death sentence.

Malia suffers from the blood disorder severe chronic autoimmune neutropenia, which means her immune system is out of whack, mistakenly decreasing the function of her white blood cells -- neutrophils -- critical in fighting bacterial infections. It means this surprisingly happy child of giggles and hugs gets sick a lot.

"In one hour she can go from a laughing, joyous little girl to a very, very sick child," said mom Crystal Concepcion from her Nanakuli home. "The disease is acting completely different than the average neutropenia, so she's susceptible to anything.

"She's come close to dying on us five times."

Malia's frequent high fevers -- as many as two times a week -- speed her metabolism, so she is underweight. She once lost eight pounds in a week.

She was receiving so much medicine in her veins that they started giving out, so doctors placed a portacap in her chest to inject the antibodies.

Malia remains upbeat in spite of having to make frequent hospital visits.

OTHER PEOPLE have the same disease, but in a far less critical form. The way the disease attacks Malia is different from ever seen before, said Dr. Wade Kyono, a pediatric blood and cancer specialist.

The typical neutropenia patient "generally is pretty healthy," Kyono said.

"We would expect the infections to not make her that sick," he said. "She gets very, very sick ... and has that chronic fever."

Kyono has consulted with the National Institutes of Health, but said there is no information on Malia's specific condition. "In a sense, we're breaking new ground," he said.

Two months ago the physician began a new treatment with a monoclonal antibody, Rituximab. The antibody targets B-lymphocytes, another white blood cell. "We hoped that the treatment would reset Malia's B-lymphocytes when they repopulate her immune system in about six months and provide long-term improvement or a cure, but so far nothing has happened," Crystal said. The treatment costs $3,400 per dose, and Malia has had four.

Another problem is that the family's HMSA insurance, which normally pays 80 percent for treatments through father Sean Concepcion's Pearl Harbor Shipyard job, has declined payment because, according to Crystal, the treatment "didn't match (Malia's) condition." The family is appealing HMSA's decision.

Out-of-pocket medical expenses already top $20,000, Crystal said.

Malia, in dad Sean's lap, left, is an inspiration to her whole family, including mom Crystal, center, Kayla, right and brother Kekoa, 10.

To assist with the mounting medical bills, One Stop Entertainment is presenting a fund-raiser at Kapono's at Aloha Tower Market Place at 7 p.m. Saturday. Tickets -- $8 in advance, $10 at the door -- are available at Volcano Joe's, All Access Communication at the Pearl Kai Shopping Center, and Waipahu Shopping Center. A fund-raiser held earlier this year raised $8,000.

Since so little is known about how the disease attacks Malia, there is no way of "protecting her accurately," Kyono said.

"We're hoping the autoimmune disorder corrects itself, so in the meantime (Malia) must be kept away from any life-threatening situations and maybe she'll recover," he said. "There's no way of predicting the ultimate outcome."

Crystal is surprisingly upbeat but also pragmatic.

"Sean and I live day to day and just watch Malia, protect her and enjoy her," said Crystal, whose two other children, 8 and 10, do not have the disease. "We're waiting a couple months for her body to get stronger, then maybe try another treatment.

"We have to be as strong as she is."

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