BOUNTIFUL -- During the first two years of her life, Eliza Williams developed a love for books.
Even as she lost the ability to do almost everything she had learned, from walking to talking to almost any kind of movement, she never quit loving books.
"When she started to lose mobility in her hands and (ability to) walk, books just remained," said her father, Callahan Williams. "It was easy for us to sit down and read books and do something that she loved."
So, through books, the Williams family is sharing her love.
Eliza, who was born March 4, 2005, and turns 6 next month, was diagnosed with late-infantile metachromatic leukodystrophy when she was 21âÑ2 years old. That was the end of a long 17 months that saw her go from a perfectly normal child to one who can barely move. During that time she suffered through symptoms that were misdiagnosed on several occasions.
First, in April 2006, she developed sudden onset esotropia, which caused her eyes to cross. After two eye surgeries corrected the problem, she began to have trouble walking.
She reverted back to crawling, and despite physical therapy, she used her arms, hands and legs less as time went on.
Things continued to get worse, and on Sept. 11, 2007, an emergency MRI was ordered that confirmed that Eliza had metachromatic leukodystrophy, which is a progressive and terminal disease that attacks the brain and central nervous system.
Within the following month, Eliza lost the ability to crawl, sit up, talk and eat independently. Now she can no longer see, but she enjoys listening to the sounds around her, especially when her parents read books to her.
Throughout the months of several trips to various doctors' offices, Nikki Williams, Eliza's mother, said they would sit in waiting rooms for hours with nothing to do.
That gave them the idea to help others in the same situation.
"She likes books so much and she can still enjoy them," Nikki said. "We wanted something positive to come out of it and honor her. This disease is so rare it doesn't get noticed like other ones do."
Nikki and Callahan, who also have a 11âÑ2-year-old daughter, Caroline, have collected and donated more than 20,000 books. Those came from big book drives done by schools, churches, Eagle Scout projects and large companies such as eBay and Marriott.
The Williams family collects new and gently used books or cash donations, with that money going toward buying furniture for the libraries.
They have used those books to create 20 libraries and donated some of the books to existing libraries, such as the one at Muir Elementary School, where Eliza attends afternoon kindergarten.
One of the most recent donations went to the Davis Diagnostic Resource Center. The library there includes a new bookcase with close to 50 books, a small table and chairs, a rug and a plaque with Eliza's picture and story.
"It just adds a nice feeling in our waiting area," said Gale Barth, of the Davis Diagnostic Resource Center. "Some kids come in scared and nervous."
Barth said now she always sees kids reading the books and is grateful for the donation.
"This family just touches your heart because they have such a great attitude," Barth said.
That attitude, Eliza's parents say, comes from spending so much time with Eliza.
"She's more of an example to us than we are to her," Nikki said.
Callahan said there is no other way to describe it than as being "very special."
"We're very fortunate to have her for the time that we've had her and have somebody so young and somebody nonverbal like she is to teach us so many things," Callahan said. "More than anything, Eliza has given us a perspective that I think as parents we want to have."
While he admits it sounds like a typical cliche, Callahan said the last three years have reminded him and his wife what is important.
"There are a lot of things that just don't matter," Callahan said.
The things that do matter are smiles by Eliza, which happen less frequently now, or when she starts breathing fast when she is excited. Eliza answers questions by blinking, and gives a long, exaggerated blink for yes.
Nikki said that there is still not a lot of information about the metachromatic leukodystrophy, but when Eliza was diagnosed, they were told it is amazing when a child with the disease reaches 5 years old.
"She's exceeding everyone's expectations," Nikki said.
Comments