"Traveling started to limit us - how many times could we run up and down the road?" asks Jo Ellen Barnhart, who writes a monthly column for The Herald-Mail.
The Barnharts' two younger sons also have special needs that require not-so-close-to-home doctor visits. Jo Ellen Barnhart says she stopped counting her kids' medical professionals when she got to 150.
Although Kathy Delaportas, Katie's mom, sometimes was able to stay with her mother in the city, the distance to Baltimore also was a strain on the Delaportas family.
"It turns out to be an all-day trip," says Joy Akers, Briana's mother. She and her husband, Tony, also have three other children.
Capone hopes to establish a local satellite clinic at Washington County Health Department. He wants to make its specialized services more accessible to people in Washington, Allegheny and Garrett counties, as well as in neighboring states. He has had some people drive five to six hours from West Virginia to visit the Baltimore clinic. Patient demand will determine whether the Hagerstown clinic will continue.
Kennedy Krieger Institute, founded in 1937, provides specialized evaluation and treatment services to individuals from infancy through age 21 who have or who are at risk for a wide array of problems, including Down syndrome.
For about nine months, the institute has had a Down syndrome outreach clinic every three months on Maryland's Eastern Shore. The Baltimore clinic is celebrating its 10th anniversary.
Kennedy Krieger contacted Washington County Health Department to provide a site, says Dr. Robert Parker, health officer for Washington County Health Department. "It's essentially their program. We thought it was worthwhile," he says.
Typically, Capone spends about an hour and a half each with four patients on his visits to Hagerstown, according to Kim Pearce of Kennedy Krieger. The only drawback Capone sees is that he will be the only Kennedy Krieger specialist in Hagerstown.
In Baltimore, the clinic includes evaluations by audiologists, physical, occupational and speech and language therapists. Behavioral and clinical psychological consultation also is available, as is a social worker to help families cope with a family member's new diagnosis.
Katie's dad, Dino Delaportas - a physician himself - takes his daughter to Kennedy Krieger's clinic because of the staff's experience with Down syndrome.
Capone makes parents aware of developmental milestones - what to expect next, Jo Ellen Barnhart says.
There is an increased risk for certain health problems in children with Down syndrome, according to information on the Web site of National Down Syndrome Society. These include treatable disorders such as hypothyroidism, middle ear infections and hearing loss and obstructive sleep apnea.
With aggressive screening for medical problems, people with Down syndrome are living longer and healthier lives, Capone says.
The professionals at Kennedy Krieger approach the patient as a whole person, says Dino Delaportas.
"They treat these kids with dignity," Delaportas says.
-- Katie and Michael