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True Christmas spirit grows on Eliza's tree

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

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.

A big rocking chair, surrounded by dozens of children's books, becomes her haven, as her parents gently rock and read to her. Four-month-old Caroline is often placed next to her, rolling and cooing around her older sister who doesn't realize how much her younger sibling resembles her own baby pictures.

"Because Eliza isn't able to function on her own, it's kind of like having twins," Nikki says of the two. "We're always feeding or medicating or changing or doing something with one of them. They're kind of on the same level, doing the same things," despite the fact that Eliza's fifth birthday is coming March 4.

But her parents don't wait to celebrate. They throw a birthday party on the fourth day of every month, compressing their celebrations of her life into the short time they know she has left.

They've come to see Eliza's condition not as a disability, but as an opportunity. "She's had such a profound effect on people. In the course of a normal childhood, most kids don't have those chances," Callahan says.

"It's not what we expected — it's a lot better. We wouldn't have chosen to have this kind of outcome before it happened, but we've learned so much."

So have extended family, friends, neighbors and the untold numbers of people the Williams family has shared Eliza's story with, in person, through the media and on her web site at They've become part of a tight-knit community of people nationwide who share information about a disease so rare that most doctors have never even heard of it.

Many of those who know her story have taken the challenge to provide her with an intangible gift of service to others, which they detail in a card or letter meant to become a gift to her and her family on Christmas morning. Even at age 2, "she was very social and would make friends with anyone," her dad recalls, explaining they wanted to perpetuate that love — and stimulate her waning eyesight — with the brightly-colored tree.

Past gifts have included everything from young boys shoveling snow and agreeing to cut their hair to make their mothers happy, to Sub for Santa projects, to gathering books for "Eliza's Library," (a project that to date has provided almost 10,000 books to dozens of local libraries) to the gift of a college scholarship for a student in need.

Cards and letters arrive regularly during the holiday season, including one postmarked "Delaware" and another from "a man in Alaska who knows about Eliza and sends us something every once in a while," Nikki says. "He spent $17 on a priority envelope to get it here in time."

They marvel at the impact a 4-year-old has had, especially among those close by, since they wondered if people would become "stand-offish" after the diagnosis for fear of intruding somehow.

"It's become just the opposite," Nikki says. "It takes us a half-hour to get out the door after church. She's is like a celebrity." Other children, in particular, are drawn to Eliza and don't have to be told to "settle down" or treat her gently. "It's just instinctive for them. They get it."

So today, as the minutes turn to hours and Christmas Day 2009 slips away, the Williams family will continue to celebrate her life in the way they have come to appreciate: holding on to the small things Eliza can do like bat her eyes or breath heavily to communicate or savoring story books in the rocking chair.

And next year, "whether Eliza is here or not," they'll gather around her tree on Christmas morning with her spirit filling the room, Nikki says.

"We plan to do this forever. It makes you put the focus on what is more important than any kind of commercial thing. We're more excited to get to the letters."

So today, and next year, and the next and the next, Eliza's tree will burn brightly with the reality of Christmas lived, loved and shared. And though she can't reply with words, hopefully she will hear the underlying message her parents see in every card and letter:

"Merry Christmas, angel."