Woodbury 4-year-old begins long recovery after rare spinal injury

Navon Lee's tiny arms and stomach propel his body across the floor as his legs lay still.

Three months after the 4-year-old woke up mysteriously paralyzed, he's starting a long road to recovery.

"It seemed like the world stopped," said his father, Tony Lee.

On Christmas Eve morning, Navon woke up unable to move his legs. Snow was falling as Tony and Neena Lee rushed their son to the emergency room. Doctors at Children's Hospital of St. Paul found an arachnoid cyst compressing Navon's spinal cord, a very rare condition. They rushed the boy into a four-hour emergency surgery, draining the cyst.

Now Navon is at home but still unable to walk, beginning what's expected to be a two-year recovery process. The family hopes he'll fully heal, someday returning to chasing his younger sister and dancing.

"We have faith he will walk again," Neena Lee said. "Some days are easier than others. It's heartbreaking."

At Children's Minnesota, Dr. Kyle Halvorson said arachnoid cysts are more commonly found in a patient's head, but rarely by the spinal column. Navon faces a long recovery process, but the neurosurgeon said the boy has made significant progress thanks to his rehab team.

"It's hard to predict how kids are going to recover," Halvorson said. "But kids are super resilient. … We always have to be hopeful, and given that he's young, he has a good chance of improving even more."

If Navon, who has autism and a speech deficiency, is frustrated by his limitations, he doesn't show it. Instead, he has remained upbeat, more concerned about playing with his sister, 2-year-old Nyomi, and collecting dozens of his favorite toys, Buzz Lightyear and Woody from the movie "Toy Story."

Before his parents rushed him to the hospital, Navon had been experiencing gastrointestinal issues for months and had been stumbling and falling for no apparent reason. For two months after the emergency surgery, the couple spent restless nights by their son's side at Children's Hospital and then Gillette Children's Specialty Healthcare. Due to the COVID-19 pandemic, no other extended family could visit.

"You'll give your children the sun, the moon, the stars. When something like that happens, it's surreal," Tony said.

The couple still agonize over the what-ifs, wishing they pressed doctors harder when constipation symptoms were initially dismissed as not serious, wondering if earlier detection of the cyst would have made a difference. But they take solace in the bright spots — the first time Navon moved his toes after surgery, the little progress they notice each day at physical and occupational therapy.

The community has also bolstered the family. Neighbors, friends and total strangers have donated more than $10,000 to help the couple pay for medical expenses. Neena lost her job as a waitress during the pandemic and is now her son's caretaker while Tony, who retired from professional boxing, works nights loading trucks at a dairy company.

"I'm just so grateful and astonished at how much love is out here in the Twin Cities," he said. "It's really humbling. Nothing besides God and love and support can heal what has happened to him."

The pink scar that runs along Navon's spine rivals any of Tony's scars from boxing. But the medical ordeal has put life into perspective, he said.

"Boxing is nothing. Fighting for a title is a walk in the park as opposed to fighting to get your child healthy and on his feet after waking up paralyzed overnight," Tony said. "Nothing but good has come from it since it happened as far as realizing what matters and people that care."

Near a box of Navon's Buzz Lightyear toys, Tony lifts his son up toward the ceiling and yells out: "To infinity and beyond!"

Kelly Smith • 612-673-4141