Reece LoCicero, the 5-year-old La Crescenta Elementary School kindergarten student suffering from an undiagnosed illness, has been accepted into an elite research program at the National Institutes of Health, officials confirmed Friday.
The child and his immediate family members will travel to the center’s Undiagnosed Disease Program in Bethesda, Md. where they will undergo a battery of tests, examinations and consultations in an effort to diagnosis his symptoms, said Dr. Cyndi Tifft, director of the pediatric portion of the program.
“The NIH just has an incredible collection of clinicians who specialize in a number of different things,” Tifft said. “If we think this is a genetic condition, we have some pretty outstanding diagnostic resources, including a new technique called ‘whole exome sequencing.’”
The Montrose family expects to make the trip this summer, although they are still waiting to confirm the dates, said Reece’s mother, Natalia LoCicero. All costs are covered by the center.
“When they called me, I almost started crying,” she said. “I was so excited and so happy. It is very hard to get into this place.”
Reece has endured serious health problems since infancy, suffering from severe fevers, internal bleeding and infections. His treatment has included long stays at Children’s Hospital Los Angeles, but doctors have not been able to make a concrete diagnosis.
Natalia LoCicero and her husband, Jason, took out thousands of dollars in loans to cover medical costs, and in 2009 were forced to give up their apartment and move into Reece’s grandmother’s home in Montrose.
When their story became public early last year, the family was embraced by the local community, which hosted fundraisers and showered Reece with gifts, including a VIP trip to Dodger Stadium and a pair of helicopter rides with local pilots. Most recently, La Crescenta-based Brownie Troop 15741 donated a portion of its Girl Scout cookie revenue toward Reece’s medical costs.
Natalia LoCicero in early November started the extensive application process for the National Institutes of Health, which included pulling all of Reece’s medical records since birth and securing the endorsement of two doctors. She aggressively followed up, calling the center regularly to check on his status.
Launched in March 2008, the Undiagnosed Disease Program is focused on undiagnosed and rare diseases, as well as unusual occurrences of more common diseases, Tifft said. Since its inception, researchers and doctors have received nearly 5,000 inquiries, and have reviewed 2,000 charts, she said. About 450 people have been accepted for testing.
Among the possible diagnoses put forth by Reece’s doctors in Los Angeles is mastocytosis, or a proliferation of mast cells that can sometimes respond to allergic triggers. The preeminent expert on mastocytosis conducts work at the National Institutes of Health, Tifft said, and officials are trying to match Reece’s visit with the researcher’s time at the center.
Reece and his immediate family members will also be given extensive genetic testing, which will help determine the possibility of a rare recessive disorder.
“When Reece first comes, we will put together for him a series of tests and consultations with various specialists that fit his clinical picture,” Tifft said. “It is a unique evaluation for each patient.”
But the program fails more often than it succeeds, Tifft cautioned. The successful diagnosis rate is low, hovering at about 15%.
Nevertheless, the LoCicero family said they are thrilled Reece has been accepted.
“I am a little nervous, but at the same time, hopeful we will be able to find out what is wrong with him so we can close this chapter in his life,” Natalia LoCicero said.