All the Care that Jeffrey Needs

Jeffrey, 8, was diagnosed with Fragile X syndrome at age 3. The genetic condition causes a range of learning and behavioral problems. “His doctor at the time dismissed it as not a big deal,” says Jeffrey’s mom, Sarah. She searched online for help and found the Fragile X Clinic at Children’s National Hospital.

“The clinic has all the care Jeffrey needs—from behavioral management to neurodevelopmental pediatrics under one umbrella,” Sarah says. Neurogeneticist Dr. Andrea Gropman expanded Jeffrey’s diagnosis to include autism, anxiety and language impairment. Jeffrey and his mom visit the clinic twice a year to see Dr. Ryan Uy, a developmental and behavioral pediatrician; Naterra Walker, nurse practitioner and Meira Meltzer, genetic counselor.

“He’s much happier now, especially at school,” Sarah says. “With the proper care and medication, he can focus better and has grown as a student. He doesn’t get as frustrated, which has meant fewer behavioral issues.” Staff at the clinic also helped with insurance challenges and they advocate for Jeffrey at school.

“Everyone at the clinic knows Jeffrey and really wants him to succeed,” Sarah says. “Their support gives me confidence that we’ll get through this. I know they’ll stick with us.”