by Lisa Hinton-Valdrighi –
’Tis the season for miracles. And Zayden Williams’ family is convinced his recovery is nothing short of a miracle.
After spending 65 days in the hospital, much of it in intensive care, the 8-year-old Middlesex County boy was released the Monday after Thanksgiving, answering the prayers of hundreds across the Middle Peninsula and Northern Neck.
“All I can say is God is good. He was on so many prayer lists. And the family would like to thank everyone for their care and support,” said his paternal grandmother Virginia Williams, who lives in Saluda and works at Kilmarnock Dental Center. His paternal aunt Kristie Williams owns and operates White Stone Barber Shop. His maternal grandmother Joanne Leigh lives in Topping.
Zayden was a typical kid. He loved playing baseball and video games, riding his bike and hanging out with friends. All that changed on Sept. 25, when after running a high fever for a day he started having hallucinations and seizures.
After an emergency room visit, he was rushed to Children’s Hospital of the King’s Daughters (CHKD), where he would remain for 10 weeks with his mom Renee Aldridge and dad James Williams, both of Middlesex County, faithfully by his side.
Physicians first thought Zayden had an autoimmune encephalitis disorder and he was administered plasma, which unfortunately did not stop the seizures, said Virginia.
After a series of cultures, CT scans, spinal taps, MRIs and various drug trials, the seizures continued. Physicians decided to put Zayden into a drug-induced coma and he was in and out of the pediatric intensive care unit (PICU) with little or no improvements.
“These were very difficult days, seeing this sick child not showing the progress his doctors and family were praying and hoping for,” said Virginia.
Following multiple misdiagnoses and weeks of trial and error medications, Zayden was diagnosed with Febrile Infection Related Epilepsy Syndrome, or FIRES. FIRES is a rare and often catastrophic, chronic epilepsy syndrome that suddenly develops following an acute febrile illness. A child may develop FIRES weeks after a minor upper respiratory illness or gastrointestinal bug. According to the Kennedy Krieger Institute, it’s a newly recognized epileptic encephalopathy. Debilitating seizures will begin and progress to a continuous state that is often resistant to conventional treatment and diagnosis is difficult because the condition is so rare and involves ruling out other conditions.
Most of Zayden’s rotating team of doctors and nurses at CHKD had never seen a child with FIRES.
“While it was good to have a reason and know why this was happening, the prognosis was grim,” said Virginia.
Northwestern Medicine says only one in a million children are affected by FIRES and only 15-20% return to normal life.
Initially the family was told he would be released around Dec. 29 with physical therapy to learn to walk and talk again. At that time, the level of care he would need wasn’t known.
“Zayden would have good days and bad days,” said Virginia. “At one point while walking the hall, he said I want to go home, let’s go to the car, which would break everyone’s heart.”
That’s when Renee, while researching FIRES, came across an article about Loyola Chicago volleyball player Grace Hinchman, who was given the drug anakinra. Renee pushed the doctors to try that drug on Zayden and, following a severe seizure that landed him back in PICU where he was intubated for four days, he received his first injection.
“And that’s when the miracles started,” said Virginia.
After enduring some days of more than 20 seizures per day, Zayden was seizure-free for more than a week. A scheduled feeding tube surgery was postponed because his swallowing ability returned. He started throwing a ball in the hallway at the hospital. At one point, he bonked one of his physicians and former Virginia Gov. Dr. Ralph Northam on the head with the ball.
Zayden was becoming his old self.
While he will need occupational therapy three times a week, he will be able to return to school in January 2023 the other two days a week.
Although he’s still dealing with seizures, Zayden is back to playing ball in the yard, hanging out with friends and his brother Kyler and sister Emily. He even snuck in a visit with Santa Claus.
Since coming home he has had some seizures, but has many seizure-free days.
“Without the support from the community, family and friends, and the many church prayers, his parents could not have stayed with Zayden the entire 10 weeks,” said Virginia.
“Zayden is a survivor, a true Christmas miracle!”
