Kristal Nemeroff—The Patient
"I've been through a lot," says Kristal Nemeroff, 26, shrugging off her 25 broken leg bones, 10 major surgeries, and weeks and months of immobility in complete body casts over her lifetime. "You don't feel like you're in the hospital at The Children's Inn."
Kristal should know. She arrived first at the National Institutes of Health at eight months of age, before The Inn was even open, to enroll in a long-term research study of osteogenesis imperfecta (OI), or "brittle bone" disease. OI is a fairly rare genetic disorder that affects the protein collagen, found in bone, teeth, skin, tendons, and, parts of the eye.
As part of her study, Kristal has come to the NIH Clinical Center at least once a year for exhaustive rounds of experimental treatment and more routine examinations for mosts of her entire life. She and her family have come to consider The Children's Inn their "home away from home."
"Staying at The Inn helps make you feel not so different," she says. "We're all learning how to adapt to our conditions. You can learn so much about life just by spending a week at The Inn, meeting other kids from all over the world. We share handicaps, obstacles, challenges, life experiences, adversity. But the most amazing thing is that we're all living together under the same roof."
Now a registered nurse working as a school health office nurse at a Stroudsburg, PA, elementary school, Kristal credits "'Nurse Kelly' and 'Nurse Debbie,' pediatric nurses at the NIH Clinical Center who were great to me" as her inspiration. "I found my place in nursing," she states. Kristal is currently studying to become a certified school nurse.
"I identify with others who must overcome adversity," she says. "It's very fulfilling as a nurse, helping others cope with their own adversities. I love being a school nurse and helping children be successful in the school environment."
Dr. Brian Brooks—The Team Co-Leader
As Chief of the Ophthalmic Genetics and Visual Function Branch at the NIH's National Eye Institute, Dr. Brian Brooks "works with tough cases, kids with rare inherited eye diseases that most don't have much experience with."
He coordinates a multi-disciplinary team of researchers, geneticists, nurses, counselors, and patients' families—all of whom work in concert with The Children's Inn. "They do a great job at The Inn of nurturing families. It could be very sterile coming to a research hospital like ours. But The Inn makes it as pleasant as possible."
Dr. Brooks and the team's current focus is on the genetics of a potentially blinding eye malformation called coloboma. "It is a rare condition—only one in 10,000 kids," he explains. "We've seen 120 patients, more than anyone else. Because we specialize in rare conditions like this, we can give the family perspective on what to expect as the child grows up.
"Our sole function is research, so we can spend the time to answer their questions," he points out. "The more information the family has, the more they feel empowered."
Dr. Brooks understands the dilemma personally. At the age of two, his daughter was diagnosed with a rare cancer—but was successfully treated and now is a thriving nine-year old. "Going through that has made me a better doctor," he believes. "We got a sense of the anxiety parents feel, the helplessness, of being out of control."
Luis and Maria Mendez—The Parents
The Mendez family lives near the beach in the city of Aguadilla, located on the west side of the island of Puerto Rico, where the climate is typically quite sunny. And that was their tip off about their three-month old daughter, Daniela Isabel.
"We noticed that she was closing her eyes a lot in the sun," recounts her mother, Maria Isabel Medina. "So we told our pediatrician, and he advised us to go to an ophthalmologist, which we did. That's when he diagnosed Daniela with coloboma.
"Fortunately, it doesn't affect her that much. It's very rare and we don't know where it came from in our family tree. But I wanted to find out as much as possible about Daniela's condition."
As any concerned parent in search of answers does these days, Maria got on the Internet. "First, I found out about her condition. Then I talked with another mom, and did some more research and came across Dr. Brooks and the NIH. We knew then we wanted to go to the best place and the best doctor to see about Daniela!"
After consulting with the their doctors at home and being referred to Dr. Brooks, the family came this past May for three days of intensive examination at the NIH Clinical Center. They stayed at The Children's Inn. "It was awesome," says Maria, "Like a family. How many happy faces working for the children—and the children smiling, too.
"The families we met were amazing; all of us together. The volunteers gave us dinner all three nights. One even spoke Spanish. We felt very welcome and comfortable."