DALLAS — The happy coo of 12-week-old Dakota Dykes, dressed in a Santa suit, masks the seriousness of his situation.
A slight fever and swollen belly a few weeks ago prompted a trip to Medical City Children's Hospital in Dallas.
"We took a kid to the emergency room that we thought had a slight temperature and constipation," recalled Dakota's mother, Stephanie Dykes. "Then — two or three hours later — we were hit with, 'We think your kid has Wolman's Disease.'"
Wolman's disease is a metabolic disorder so rare only about 50 cases have been reported worldwide. There is no cure.
"In this disease, basically the cholesterol, fats and triglycerides have no way of being metabolized, and they build up in the body," explained Dr. Carl Lenarsky, a pediatric hematologist.
Dakota's swollen belly is indicative of an enlarged liver, an enlarged spleen and fluid buildup from the condition.
Specialists believed a bone marrow transplant was Dakota's only chance for survival. The family was starting to raise funds for it.
"But unfortunately, he's had so many complications... so many problems... it's so advanced... we don't feel that that would work for him," Dr. Lenarsky said.
For this young couple with a five-year-old daughter at home, a season of joy has become a time of tough choices.
"Our five-year-old, she wants a tree at home, she wants Christmas lights," Dykes said. "And then it's like, what do we do up here? Do we go home and do we leave him here?"
Saddled with medical bills and sadness, the Dykes are hoping someone might see their son's story and reach out with medical hope.
Until then, they are savoring every moment of unforgettable sweetness and praying that their rare little Santa baby celebrates his first Christmas.
E-mail jstjames@wfaa.com
