Jax, 9, walks with authority when he enters Children’s National Hospital for an appointment. He hands his mom’s ID to the security guard and announces what department they’re visiting. “Then he leads the way to get my coffee, maybe stops by the recording studio and then wanders past his favorite departments to say ‘hi,’” his mom, Robyn says. “He loves the place and the people.”
The friendships Jax has built at Children’s National help his family handle many hardships related to his health. “When we go to the NICU,” Robyn says, “I thank them for taking care of this kiddo who showed up there at less than five pounds with mysterious ailments.” Jax, who is now in fourth grade and loves math and science, was born with a genetic disorder and rare congenital heart condition. He needed open heart surgery at three months and care from specialties including genetics, cardiology, gastroenterology, neurology, urology and orthopeadics.
Jax has a sunny outlook on things: the more departments to visit, the more friends he makes.
He especially loves to stop by the blood donation center, where his family and friends have given blood since his open-heart surgery. “We try to give blood or platelets whenever he has an appointment,” Robyn says. “Every time we go to the center, the most amazing staff welcomes us — mostly Jax — with open arms. We've spent so much time in that yellow room that it represents love to us.”
The Race for Every Child also represents love to Jax’s family. Everyone gets involved in the annual event, including Jax’s twin brother Martin as a coach, and his older sister Emma as their team captain. “We've made the event a celebration of our Jax, of his special body and his awesome hospital,” says Robyn.
Martin, who was recently diagnosed with diabetes and is also a patient at Children's National, takes the competition seriously. For Jax, it’s all about fun. “Jax knows he's different,” Robyn says. “But he grins when he finishes and cherishes his medal each year. It's Jax's race and he's our hero.”