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Stem cell therapy combats a one-in-a-million immune disorder for 4-year-old boy

Elizabeth Koh, Miami Herald on

Published in Health & Fitness

If it weren't for the wheeled IV stand that squeaks behind him as he moves, Jovon Moss might seem like any other 4-year-old boy.

Wearing a tot-sized costume modeled after the comic book character, The Flash, he races through the Sylvester Comprehensive Cancer Center clinic so quickly that nurses have to make sure he doesn't trip on the tube administering his twice-monthly immunoglobulin drip. He regularly swipes his mother's iPhone to watch YouTube videos during his treatment, yet is so eager to share his Scooby Doo gummy treats that his toothy smile disappears if someone says no thanks.

Just six months ago, Jovon hovered near death, diagnosed with a rare immune disorder that had bounced him in and out of the hospital since his third birthday. His symptoms had ballooned from flu-like coughs and tiredness into seizures and a tumor blocking half his airway. Doctors at UHealth would find Jovon had cancer -- stage 2 lymphoma -- connected to X-linked lymphoproliferative syndrome, a literally one-in-a-million genetic disorder that made him vulnerable to certain infections.

"That's the reason he got all of this," said Gary Kleiner, Jovon's physician and a pediatric immunologist at Sylvester.

Now, thanks to chemotherapy and a new stem cell treatment, Jovon is on the mend, his mother Brittany Fluellen said.

Jovon's year-long journey started last September, when his mother first noticed he was coughing and feeling tired. She took him to the hospital, where doctors said it was likely he just had a virus.

But the virus didn't go away. It got worse.

His mother took him back to a hospital a week later, and he was hospitalized in the ICU with Epstein-Barr virus, commonly known as mono. He spent weeks in a coma and began suffering seizures. Fluellen remembered the first time she woke up to see Jovon's tiny 3-year-old body shaking in the hospital bed. She ran into the hallway, screaming for help.

"Then, he couldn't breathe. He was intubated twice," she said.

Jovon eventually recovered enough that he was discharged in November after three weeks of rehab, though he didn't seem that much better to his mom. His urine was still a murky brown, and he seemed lethargic, she noticed.

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