Ben Russell, NBC 5 News
Zala Caffey has late infantile neuroal ceroid lipofuscinoses, a rare disorder with no known cure that is fatal between ages 8 and 12. MedStar EMS helped Zala and her family trick or treat on Halloween.
This year, an Arlington family was able to trick or treat together for the first time.
One of the six Caffey children, Zala, has late infantile neuroal ceroid lipofuscinoses, a rare disorder with no known cure that is fatal between ages 8 and 12.
Zala cannot walk or talk. She is fed through a tube and is going blind. Her mother said the 8-year-old is the only person with the disorder in the Dallas-Fort Worth area.
But thanks to a MedStar EMS ambulance crew, she went trick-or-treating with her family on Thursday night in a Fort Worth neighborhood near the zoo.
"There's not even any words other than amazing," said her mother, Kenda. "You go through the vocabulary and it's like, what do you say? It's unbelievable."
The escort made the trip possible, Kendra Caffey said.
"I can get all the kids out together," she said. "I don't have to worry about whether she's going to have a seizure or whether she's going to struggle to breathe, because we have this ambulance service here that is going to have everything that she needs in order for us to be out here with her."
Other children also trick-or-treating in the area gave Zala some of the candy their received, and a large group of kids gave her a long round of applause when paramedics loaded her off of the ambulance.
"She's not going to get to drive a car. She's not going get to get married. She's not going go get to go to college," Kenda Caffey said. "But when kids like this out here see her and they're handing her little gifts and they're like, 'Oh she can't walk. She can't talk,' maybe they will realize and they will enjoy life a little bit more and take advantage of, you know, what they've got."
Late infantile NCL begins between the ages of 2 and 4, according to the National Institute of Neurological Disorders and Stroke. It is part of a group of inherited disorders of the nervous system that includes Batten disease, the juvenile form of NCL.