Meet the ‘Miracle Child’ almost killed by an ear infection (WATCH)
Jude Siperstein has lots of energy.
The 6-year-old runs back and forth. He jumps over obstacles. It's not as easy at it should be, but Jude's hard to contain.
Jude does take breathers — moments playing with action figures when he regroups, refocuses and enjoys some simpler recreation as a reward for working hard.
Working hard to move. Working hard to do what comes naturally for most boys his age. Working hard to do what seemed impossible two years ago.
"I'm a miracle child," Jude says, his physical therapist alongside him.
'Be prepared for him not to survive'
Jude had always been a rambunctious little boy, his parents, Amy Boright and
Jared Siperstein of Scotch Plains, said.
He loved Teenage Mutant Ninja Turtles (well, all ninjas). He loved dancing. Soccer. Swimming. Playing with other kids.
"Basically running around as much as possible and making us chase after him," Siperstein said.
Two years ago, at age 4, Jude suffered an ear infection — as young kids often do. But the usually exuberant toddler seemed particularly set back. He seemed tired, and in severe pain. The young lefty was using the right side of his body for routine tasks.
When Boright and Siperstein took him to an emergency room a few days later, they were told not to worry. These things happen with ear infections. Keep up his treatment, and he'll be fine.
That night, Boright said, Jude seemed even worse. Lethargic. When Jude's parents brought him to an ER again, the assessment was severe.
"(They) essentially told us we needed to be prepared for him not to survive," Boright said.
Jude was suffering from meningomyelitis — which is to say his infection had spread to his brain and inflamed his full spinal cord, impairing mobility in half of his body. Boright said she and Siperstein were desperate to keep their young boy awake — afraid if he fell asleep, he might never wake up.
It was a reality Boright and Siperstein couldn't entirely grasp.
"I think it's almost like stages of grief — where you go through the stages of being angry at the doctor for misdiagnosing him," Siperstein said. "Angry at yourself, maybe a little bit, for not catching it as quickly as you could have."
Jude's father said he still wonders if he'd been more insistent — if he'd yelled at the doctor who'd misdiagnosed Jude's condition — how things might have been different.
'The Miracle Child' takes a step
Boright said her goal was to keep Jude well enough to survive — and to bring him to Children's Specialized Hospital in New Brunswick. It's one of 13 locations providing inpatient and outpatient care for children facing special health challenges.
Jude's mother had volunteered with the hospital years ago. She knew what its pediatric specialists could do.
"We knew that if he had any chance of having any mobility, and movement, any walking, any holding his head up again, that was going to be the place that would help him do that," she said.
Boright and Siperstein had little sense of the task ahead — of what would be involved in Jude's recovery. Would he be better in a few weeks? Longer?
But when staff showed up to assist Jude in Ninja Turtles costumes, Jude's parents knew they'd made the right choice, they said.
It's been a long two years. Jude has had to learn to hold his head up again. To sit up. To stand — first with assistance, and then on his own.
"It was really amazing because we got to see him take his first steps for the second time," Boright said.
The moment wasn't lost on Jude — who'd been going through months of occupational therapy, physical therapy and recreational therapy.
"To be able to walk again and see the light at the end of that tunnel was huge for him," Boright said.
'Every week, there's gains'
Jude's time as physical therapy inpatient lasted about three months. He continues to attend therapy at Children's Specialized's Mountainside for few days each week.
He still struggles. He walks up stairs using his full body — but he can walk up stairs. Jumping takes concentration — but he can jump. The left side of his body remains weak — but he can use it.
And Jude's parents are optimistic he'll eventually make a full recovery — not always a guarantee with meningomyelitis.
"Every week, there's gains," Boright said.
Children's Specialized has chosen Jude as its champion for Children's Miracle Network Hospitals — it's an honor given to one child each year. He (with the help of his family) has been serving as a spokesperson for both the hospital and network, and they're set to soon travel to Washington, D.C. and Disney World to spend time with other champions from around the country.
They've also represented Children's Specialized at fundraising activities. The hospital network is currently conducting campaigns with Wawa and Dairy Queen, giving customers the opportunity to donate to their programs when shopping at the chains.
"I think champion means to Jude that he's worked really, really hard," Boright said. "And he wants to show other kids that if they work really, really hard, just like him, that they can get better too."