Story by Melanie Modlin
Photography by Veronika Lukasova
The Children's Inn at NIH is a unique homeaway-from-home for children with serious illnesses and their families.
Meet Channing O'Halloran. Before she was 1 year old, she was diagnosed with cystinosis, a genetic illness that used to be a death sentence for kids before they reached age 10. But her family wouldn't accept that scenario. To get better access to top doctors, the O'Hallorans moved to the Gainesville, Fla., area. They also started clicking away on the Internet, determined to become cystinosis experts.
Their online sleuthing kept pointing to the name of NIH researcher Dr. William Gahl, a leader in the treatment of cystinosis. In November 2005, the O'Hallorans traveled to NIH in Bethesda, Md., and met with Dr. Gahl, who prescribed the therapy that has allowed Channing to thrive. Today, she takes tap and ballet, and plays the guitar. But she's still a little girl in danger. Four times a day, she must take Cystagon, a drug that rids the body of the harmful crystals that are the hallmark of cystinosis. On a recent visit to see Dr. Gahl, Channing and her mom stayed at NIH's Children's Inn, which houses children (and their families) undergoing newly developed therapies at the NIH Clinical Center.
Asleep in the Children's Inn: On a sunny Wednesday morning, Channing is in dreamland in one of the 59 guest rooms at the Children's Inn. The private, nonprofit facility on the NIH campus in Bethesda, Md., is unique in the United States. Its philosophy is that families make a difference in the treatment of patients, and that the health care team must care for the patient and his or her family as one.
Riding the shuttle: Channing and her toy cat Snowman take the short bus trip from the Children's Inn to the NIH Clinical Research Center, where she'll have her checkup.
With Dr.Gahl: Dr. William Gahl (right) of the National Human Genome Research Institute meets with Lanna (left), Channing's mom, to discuss her daughter's condition. Pediatric nurse practitioner Gretchen Golas keeps Channing entertained. Gahl is encouraged by Channing's progress and tells Lanna that they don't need to come back for two years. Gahl is considered the nation's expert on cystinosis. "Of the 500 or so patients in the world who have been identified with the disease, NIH has put me in the position to see more than 200," says Dr. Gahl. "That's remarkable. A researcher needs to have access to the people who have the illness. Here at NIH, the children can come for free, stay for free and be treated for free. There's nothing to compare to that anywhere else." Without The Inn, many of NIH's larger pediatric studies simply couldn't be done.
Drawing Blood: The blood drawn from Channing will show how much cystine is in Channing's white blood cells. If there's too much, crystals form in the patient's organs and shut down their function. Today, Channing's cystine counts are in the "normal" range.
Channing hugs fellow cystinosis patient, Alex:They could almost pass for twins. After seeing the doctor, Channing hugs Alex Weaver of Mechanicsville, Va., who also has cystinosis and has also just seen Dr. Gahl. The families of the two children became friends while staying at The Children's Inn.
Medicine and mom: The emotionally taxing Clinical Center visit is over, and Channing collapses into a nap. Still, Lanna must stay on the clock. At the stroke of noon, as she does every 6 hours, she prepares to give 200 milligrams of life-saving Cystagon to Channing, by mouth. "I told the doctors, tell me what to do to save my child and I'll do it. I'm going to do it better than anyone."
A sunnier Channing emerges after the Clinical Center business:As mom makes the bed, preparing the room for the next guest, her elfin daughter dashes around the room. We're going home!
Headed home:Late in the afternoon, mother and daughter await a ride to the airport, on a bench in front of The Children's Inn. They'll return tonight to Hawthorne, Fla., and to husband and father Channing James O'Halloran. The day has been hectic but the medical report good. The Children's Inn has helped provide them a home-like haven during their stay at NIH.
About the Children's Inn
The Children's Inn at NIH is a private, non-profit, familycentered residence for pediatric outpatients and their families. Its purposes are to keep children together with their families during serious illness, reduce their stress and facilitate their healing through mutual support. The Children's Inn opened its doors in 1990 to receive pediatric patients and their families. Since then, The Inn has been in continuous operation: 24-hours-a-day, seven days a week, 365 days a year. During the past 16 years, nearly 6,000 seriously ill children and their families have made almost 40,000 visits to The Inn. For more information, call (301) 496-5672 or toll free 800-644-4660 or visit www.childrensinn.org/.
Two Other Family Residential Programs
Ronald McDonald House The three core programs of the Ronald McDonald House Charities (RMHC)—the Ronald McDonald House, Ronald McDonald Family Room and Ronald McDonald Care Mobile—are focused on helping families in need. The cornerstone Ronald McDonald House program began in 1974 based on a simple idea: Provide a "home-away-fromhome" for families of seriously ill children receiving treatment at nearby hospitals. Since that time, more than 10 million families around the world have benefited from the comfort provided by a Ronald McDonald House. The Ronald McDonald Family Room program extends the comfort of a Ronald McDonald House to a hospital setting. The Family Room provides a place to escape the stress and tension of the hospital. For more information, visit www.rmhc.org.
The Fisher House program is a private-public partnership that supports America's military in their time of need. Because members of the military and their families are stationed worldwide and must often travel great distances for specialized medical care, Fisher House Foundation donates "comfort homes," built on the grounds of major military and VA medical centers. These homes enable family members to be close to a loved one at the most stressful times—during the hospitalization for an unexpected illness, disease or injury. For more information, visit www.fisherhouse.org.