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For 2-year-old Emily Jacobs of Soldotna, no matter how much kissing, hugging, and lullaby singing her mother, Marcia, does, there is little comfort from her condition involving chronic symptoms such as headaches, vomiting, choking and crossed eyes, to name just a few.

In June, Emily was diagnosed with a Chiari malformation of the brain, which is a space in the lower rear portion of the skull smaller than normally should be.

This has caused the base of her brain to be compressed and her cerebellum to put pressure directly on top of her brain stem. This pressure has restricted fluid flow around her brain, and forced a hole into her spine where the fluid is leaking out and into her spinal column.

"This is my second journey through a serious, life-threatening brain disorder of my little daughter. My oldest daughter, Anjuli, died at age 4 from brain stem cancer in 2001," Marcia said.

Emily's condition would require surgery, but the procedure is very complicated and risky, so the doctors at Children's Hospital in Seattle decided to try and postpone the surgery until Emily was 3 years old (on June 10), because it would be safer then. They sent her back to Alaska for "watchful waiting."

"She started doing poorly in mid-August and she was pretty bad by September. The watchful waiting wasn't going to work," Marcia said.

The two returned to Seattle where doctors deduced the hole in her spine had gotten worse.

"They could clearly see she wasn't doing well and she was at risk of permanent nerve damage throughout her whole body," Marcia said. "It was such a risky operation that they couldn't do the whole thing, so they did part of it, in the hopes of improving her situation, or at least buying her more time before the big operation."

On Oct. 5, doctors removed a piece of Emily's skull, part of one of her vertebrae and they cut some of the ligaments restricting her brain. Emily was in the intensive care unit for 24 hours and remained in the hospital for five days.

"Full recovery (from the surgery) is expected to take three to six months, but she's already shown some improvements," Marcia said. "There's less pain, and less choking. No more crossed eyes, and she's less wobbly on her legs. She giggles and laughs every day now."

Despite these positive signs, Marcia said it is too soon to tell if her daughter is on the road having the hole in her spine heal and her conditions abate, or if the worst is yet to come.

"Her condition isn't curable," she said. "Emily could still develop serious conditions and require more brain or spinal surgeries -- including the big, risky surgery the doctors first told me about, but I'm trying to stay positive."

Marcia will need to monitor Emily for four to six weeks at home since the risk of illness or infection at a day care is too high. Emily also will need to return to Seattle in December and April for more scans, and she will be closely monitored for at least two years after that.

"It's a long road, but it gives me hope," Marcia said.

Unfortunately for Marcia, these surgeries for her daughter, pain killers and other medications, and the constant monitoring of her condition, all come at a price -- a very high one.

"I ran out of paid time off in May, so there are no paychecks coming in, but I have to be with her 24 hours a day," Marcia said.

Insurance and some financial aid through Children's Hospital in Seattle has helped offset some of the cost, but there is still a tremendous amount of medical, mortgage and other bills that have piled up.

"The second biggest worry in all of this has been finances," Marcia said. "It's been almost overwhelming."

Not wanting to see her suffer any worse than what she already has, friends and coworkers of Marcia are planning a fundraiser for her this Friday.

"She's one of those people who gives, gives, gives all the time," said Brain Heath, who became friends with Marcia during a St. Baldrick's fundraiser for children's cancer research.

"People like her are so used to giving, it's hard for them to ask for help when they need it, so we wanted to help in whatever way we could."

The event will be a holiday bazaar featuring home-based businesses, such as Pampered Chef, Avon, Usborne Books and Wildtree Herbs, with a percentage of the proceeds going directly to help Marcia and Emily with their medical and travel expenses for this year. It will be held Friday, in the Denali Room at Central Peninsula Hospital, from 10 a.m. to 7 p.m. Home-based businesses are still being sought, and anyone interested in participating can contact Brian Heath at 398-9690.

"With all she's got going on, it would be great to take some financial stress off her," he said.

Marcia said this help from her friends and coworkers humbles her.

"It's wonderful to be part of a community where people take care of each other," she said.

As a fundraiser to help Marcia and Emily Jacobs with their medical and travel expenses, there will be a holiday bazaar featuring home-based businesses -- such as Pampered Chef, Avon, Usborne Books and Wildtree Herbs -- on Friday, in the Denali Room at Central Peninsula Hospital, from 10 a.m. to 7 p.m. Home-based businesses are still being sought, and anyone interested in participating can contact Brian Heath at 398-9690.

Joseph Robertia can be reached at joseph.robertia@peninsulaclarion.com.