It was like a bad dream. Four days before Baylor University basketball star Isaiah Austin would hear his name called in the NBA draft in June, a routine physical revealed that he had a genetic disorder called Marfan syndrome. His NBA career was over, but as he noted, his life was not.
Victoria Everett knows Austin’s nightmare firsthand.
When the 27-year-old Philadelphian heard her baby boy diagnosed with Marfan syndrome earlier this year, she was not sure what to think. Neither she nor her family had any idea what the condition was.
When Josiah was only 33 weeks in the womb, he had already been diagnosed with an enlarged heart, but it wasn’t until after he was born on Jan. 10 that the true extent of his condition came into the grim light.
“He was on a breathing machine and he was having severe heart and lung problems. He was there [in the NICU] for about a month and a half,” Everett told The Root.
He was eventually sent home on oxygen, but he would be readmitted, going back and forth, until about March 29, when he returned to the hospital. Josiah would remain hospitalized until his death on June 29 from cardiac arrest.
“Because of [Marfan], his airways were floppy and his heart was enlarged, and it was leaning on his airways, so he had a lot of breathing support,” his mother explained, subdued. “He was on a feeding tube; he couldn’t eat.” Josiah also had the typically long fingers and toes and limbs associated with the condition.
Everett had been told up front that her child’s chances of survival were slim. “He was fighting and fighting to breathe, fighting for his heart. He was on several different medications, some of which weren’t even made for children,” she said.
Because of the severity of Josiah’s illness, it was recommended that Everett not work. She applied for Social Security for him but was unable to get benefits because of his extended stay in the system. She also had her 21-month-old daughter, Sophia, to take care of, and although she had the help and support of family members, the young mother recognized that just because her world was spiraling didn’t mean that she could expect others to drop what they were doing to take on her problems. “No one’s life stops because you’re going through a crisis. Even though people are willing to help, they still have to live their life,” she said.