True Christmas spirit grows on Eliza's tree

Good deeds let family turn daughter's illness into symbol of hope

Published: Friday, Dec. 25 2009 12:00 a.m. MST

Callahan Williams holds Eliza in her bedroom next to the good-deeds Christmas tree at their Bountiful home last week. The 4-year-old is dying of a rare disease.

Laura Seitz, Deseret News

BOUNTIFUL — There is, on this Christmas morning, a 4-year-old child whose wishes were not fulfilled by Santa.

There are no toys under her tree, no crumpled gift wrap and ribbon, no squeals of delight. Only her penetrating eyes with their dimming gaze straight from heaven, her tiny ears listening to the quiet sound of good deeds recited by loving parents who cherish their daughter's every breath.

Eliza Williams has just experienced what may be her last Christmas morning, cradled in the arms of her small family: mom Nikki, dad Callahan, and baby sister Caroline. Rather than loud laughing or rowdy rough-housing, it is peaceful at the Williams' residence, where the best part of Christmas was scattered under Eliza's tree.

You see, there's a bit of Christmas every day in her world, where the tree in her bedroom corner stands year-round, awaiting the written accounts of gifts given in love and sacrifice by a group of volunteer elves, whose number and geographic distribution grows each year. They are neighbors, extended family, friends and strangers who have been touched by a 20-pound angel who no longer can run, walk, sit, talk, eat or move much of anything but her eyelids.

Her dad says the best part of Christmas comes after the gifts in the living room are cleared away. The family's traditions now include the reading of the dozens of cards and letters under the tree. Each details a tale of service done in Eliza's name by loved ones and people she'll never know.

The running tally of good will will become Eliza's legacy.

Born in March 2005 with metachromatic leukodystrophy — a rare disease that attacks the brain and central nervous system — Eliza appeared normal, not only to parents who were thrilled to welcome their first child, but to doctors who examined her. Then, as she grew into a toddler there were troubling signs: her eyes became crossed and were surgically corrected, only to have one move out of position again; her gait was unsteady; and things just felt "off," says Nikki, a special education teacher who had worked with severely handicapped children for a few years before Eliza was born.

Doctors assured the couple she would grow out of what seemed to be relatively minor problems, and they didn't want to argue. Hope kept them going, as her condition would improve temporarily after specific symptoms were treated.

When she was given a small walker to use to steady her gait at age 2, she was able to walk better — but only for a short time. She began to crawl again. At that point, doctors suggested that Eliza see a neurologist. After months of testing and three misdiagnoses, the news came after an MRI on Sept. 11, 2007. The irony of personal devastation on a day the nation now remembers in horror each year was not lost on her parents.

She lacks an enzyme in her blood called Arylsulfatase-A, which allows a build-up of white matter in the brain and central nervous system, causing destruction of the myelin sheath that facilitates communication between the nerves and the brain.

Developmentally, Eliza would continue to regress back in time, toward an infantile state. And within a few short months or years, the disease would take her life. The process is incurable and irreversible — and it proved to be impatient.

Within six weeks of getting the news, "she couldn't move and couldn't crawl, and she was drooling a lot," Nikki remembers. "Swallowing became very hard. One of our neighbors who is a doctor recommended that we get her a feeding tube," which they did in November, only two months after the diagnosis.

At this point, Eliza is 4, going on 5. She lies on a cushy foam pad in the living room during the day, where she can hear the sounds of family life hovering around her. Her toes are pointed in a permanent ballerina pose, her legs stiff and her arms opened at the elbows as if she's ready to create an angel in the snow.

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