It is a disease without a cure, although a bone marrow transplant may delay progression of the disease for some. People who have sought bone marrow transplants for their children say the symptoms freeze where they are. You don't get anything back. But if all goes well, it doesn't steal anything more, either. A number of families who lose one baby to MLD they didn't know they carried are able to get gene testing on later babies and opt for the bone marrow transplant early.

By the time it was an option for Eliza, she'd already lost pretty much everything. Except for the love of a mother who reads to her and talks to her constantly. The love of a father who paints her tiny toenails burgundy and blows bubbles into her hands and makes funny noises so she can laugh.

The love of parents who believe in a loving God and an afterlife that will set her free, where they will see her again when it is time.

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As fall turned into winter last year, Eliza was anxious and fussy. These days, she's mostly calm. She sleeps at night and takes a single nap during the day, although she's more groggy when the newspaper reporter and photographer come to her house because she's recently had seizures, and the medication given to control that slows her way down.

But she's not in severe pain like she was. And she's breathing OK, although she drools a lot. Mom or Dad are always wiping her mouth. Many children with MLD need to be suctioned, and that's likely in the future. They've been told breathing will get harder, and she'll likely die of a respiratory infection. Most children with infantile MLD die around age 3 1/2.

Right now, they embrace as a family the things the little girl still loves. Weather excites her, especially the feel of snow or rain on her face. They like to take her outside. She still loves water — the feel, the sound. After she was diagnosed, they went to San Diego so she could dip her foot into the ocean. Family friends arranged for her to play with a dolphin. Now she's content to listen and feel the drops of water on her face.

Cousins and neighbors come visit, and she still loves babies and other kids, although the signs are becoming more subtle, Callahan says. He looks for that little smile, the quicker breath.

As they tell Eliza's story, Callahan strokes her hand or cuddles her. She is, he notes, the only grandchild on his side of the family.

"You are the party, huh?" he coos close to her ear.

And she really is.

She will not have many more birthdays, so they started a tradition when she was diagnosed. They have a small birthday party on the fourth day of each month, inviting friends and family over for chitchat and a little dessert. On party day, there's a pile three deep of shoes inside the front door as dozens of friends drop by.

"Eliza always loved birthdays, and 'Happy Birthday' is one of the last songs I recorded her singing," Nikki says. "It has been a fun way for us to celebrate Eliza."

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Building Eliza's Library

Because Eliza always loved books, her family and friends started gathering them. They hope to get thousands — they're calling it Eliza's Library — to donate in her honor to special education classrooms and health clinics that serve children throughout the state. A neighbor boy, Kyle Dunshee, took it on as a Scouting project. They've gathered about 2,800 books so far. More about Eliza and her library is online at Elizaswish.org.

E-mail: lois@desnews.com