Brunswick girl, 6, battles potentially deadly blood disorder

Posted Aug. 14, 2012, at 3:35 p.m.
Kiara Pacheco, 6, suffers from aplastic anemia, a blood disorder.
Photo courtesy of Erika Carlile
Kiara Pacheco, 6, suffers from aplastic anemia, a blood disorder.

BRUNSWICK, Maine — Kiara Pacheco is registered to enter first grade at Coffin Elementary School, and that’s not far away — school begins the day after Labor Day.

The 6-year-old with the big smile would love to go to school every day, just like other kids. But Kiara can only do that on days she’s not undergoing medical treatment in Scarborough. She suffers from aplastic anemia, a blood disorder that has rendered her health in a dangerous state.

“If she’s feeling good, doesn’t need a blood transfusion and there’s nothing going around at the school, she’ll go,” said Kiara’s mother, Erika Carlile. “She can’t climb on the playground because if her platelets are low and she bumps her head, her brain could bleed. We’re just playing it day by day.”

Kiara and her family have been doing just that since late February, when doctors diagnosed her with the bone marrow disorder. Her blood counts were so low that her mother had to pull her out of kindergarten and quit her job as a server in a restaurant.

When Kiara can’t go to school, her mother home-schools her.

“I just started doing work with her on my own,” Carlile said. “It’s hard to wake up every morning and not know how your child is going to do. But Kiara and her 11-year-old sister are my rock. I get up every morning to take care of them.”

Carlile’s aunt, Patty Biggs, and cousin, Jen Caldwell, have stood by her side throughout this ordeal.

Kiara has platelet transfusions every seven to 11 days and blood transfusions every 15-30 days — and sometimes both. While normal platelet levels are around 150,000, Kiara bottoms out at around 7,000.

Treatments, administered through a porta-cath above Kiara’s heart, can last “as little” as 3½ hours, or as long as seven hours. Carlile needs help.

“As a family member, you’re saying, ‘what can I do to help?’” said Biggs, who organized a successful blood drive at the Knights of Columbus hall. “Her numbers are horrific.”

Specifically, Kiara’s white cell count last Monday was 4.9, compared with a normal of 5.3-11.5. Her ANC, or infection fighting cells, are 886 compared with a normal 2,000-7,000. Her red blood hemoglobin count was 9.7, and 10-12 is considered normal.

“Erika thought she had some sort of virus and sent her to the hospital,” Biggs said. “This was a normal, healthy 5-year-old. It came out of the clear blue sky.”

Actually, her mother says, Kiara acts now like a normal 6-year-old. For the most part.

“Sometimes you wouldn’t know she’s sick,” Carlile said. “She’s full of life and energetic, but does have down moments and cries. For the most part, she’s a typical six-year-old. She likes to have fun and play.”

The aplastic anemia, though, has taken a toll.

“I wouldn’t wish this on my worst enemy,” Carlile said, her voice trembling. “The treatment doesn’t seem like it’s working.”

A bone marrow transplant is the last resort, should transfusions continue to fail. Doctors, Carlile said, are evaluating Kiara every six months, and have contacted a transplant team in Boston. Kiara is on a bone marrow donor registry.

“She would have to have the perfect match for a bone marrow donor,” Carlile said.

A benefit dinner and auction for Kiara Pacheco and her family is scheduled for Saturday at the Knights of Columbus hall on Columbus Drive in Brunswick.

Pacheco, 6, was diagnosed with aplastic anemia, a blood disorder.

Saturday’s event begins at 5 p.m. with a dinner and auction. A live band, Sidetracked, will perform at 8:30 p.m. Raffles, a 50-50 drawing and children’s activities are also on the agenda.

All proceeds will go to the family for medical bills and expenses.

For information, contact Jennie Caldwell at 781-915-7198 or ourloveforkiara01@yahoo.com.

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