Sixteen months after the transplant, Raymond, Laura's doctor, said Laura continues to have some issues with her motor skills "because we're waiting for the transplant to have its fullest benefit.

"We need to keep optimistic that it is eventually going to arrest her disease," he said. "That's what we're really striving for."

In the interim, the family is living out its mantra of simply enjoying the day. Because her immune system has worked itself back up to a functional level, Laura has begun to make more frequent trips outside the house. Outings both large and small provide breaks from doctor's appointments and daily boredom.

She attended a 2012 preseason Ravens game thanks to tickets donated to her by the Towson-based Cool Kids Campaign, and has met and received autographs from countless Ravens stars over the course of her illness. Her Facebook photo features herself, Emily, Darlene and a mustachioed Joe Flacco.

Her eyes light up at the memory of driving a motorized shopping cart in Target on a recent trip with her mother and some of the Towson occupational therapy graduate students who have volunteered to visit with Laura. She delighted in the girls' suggestion that if she hit someone, the victim should be attractive and in his 20s. She also enjoys going to the movies and keeps up with the celebrity gossip each day on the website TMZ.

The family held a celebration in October 2012 to thank family and friends who supported them. be it with meals, shared moments or respites in past days like those in the future that will become more difficult as Laura's condition changes. The celebration was something of a coming-out party for Laura, a daylong commitment to owning her disease and showing the dozens of loved ones that it was affecting only her body, not her spirit.

Yet the largest undertaking thus far was a trip last August to the Hunter's Hope Family and Medical Symposium at a resort outside Buffalo, N.Y. The foundation was created in honor of Hunter Kelly, son of former Buffalo Bills quarterback Jim Kelly, who died in 2005 of a similar leukodsytrophy.

In the immediate aftermath of the diagnosis, Paul and Darlene thought it best to shield Laura from the harsh realities of the disease, especially those for whom the disease was further advanced.

Laura insisted, however, that she wanted to meet other people, young and old, who shared her plight, and she and her mother enjoyed a relaxing trip to Buffalo during which Laura got into a hot tub, made new friends and effectively became a part of the small community of people living with the disease.

After the trip, her father asked, "What did you want to go there and say?" and Laura was quick with her answer.

"My name is Laura, and I have MLD."