'Super Jude' makes trip to Delaware for treatment for rare disor - | WBTV Charlotte

'Super Jude' makes trip to Delaware for treatment for rare disorder

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Jude has been dubbed "Super Jude" due to his fight with a rare genetic disorder (Photo courtesy: Paul Corbin - a friend of Jude) Jude has been dubbed "Super Jude" due to his fight with a rare genetic disorder (Photo courtesy: Paul Corbin - a friend of Jude)

Many of you have fallen in love with little Jude Peters. The Concord boy was born with a rare genetic disorder called RCDP, which is a rare and lethal form of dwarfism affecting less than 60 children world wide.

“When they first told us Jude had RCDP, they said we had a higher chance of winning the lottery six times,” said mom Hannah Peters.  “Charlotte doctors also told us he had two weeks to two months to live and sent us home with a bunch of morphine.”

Jude is now almost two years old.

A miracle, to be sure, but little Jude is still quite little.  He’s just over nine pounds, in zero-to-3-month-old clothing and wears preemie-size shoes.

Hannah and her husband Sully spend every day worrying about, raising, and building their lives around their son.

“Being his dad is the greatest thing I could ever ask for in life,” said Sully.  “I mean, he’s my whole world.”  He looks towards his wife smiling.  “Well, him and Hannah, of course.”

We traveled with the Peters family to Delaware to get a behind-the-scenes, intense look at Jude’s specialized medical care at Nemours Dupont Hospital for Children.  Sully and Hannah – both young parents at 23 years old – granted us full access.

One of Jude’s doctors in Delaware is Dr. Michael Bober. He’s one of the country's leading experts on RCDP and also known for being the doctor often featured on TLC’s show “Little People, Big World.”

"RCDP is brutal,” Dr. Bober said.  “It's relentless. With some of these kids it's like a game of whack-a-mole. You knock one problem down and another pops its head up."

Dr. Bober says Jude is overall doing well and growing appropriately, but as a trained geneticist he’s realistic about the future.

"There is no question people with RCDP have limited lifespans,” said Bober.  “Jude is not going to be 70. He probably won't be a teenager. But where in the spectrum between two months and the end, I have no idea."

Hannah and Sully say they understand Dr. Bober has to be pragmatic – that doesn’t change their never-ending hope.  They say they come to this medical center roughly every three to four months to give Jude intense therapy to work on his strength, one-on-one sessions with the best of the best, and, on this trip, get exciting news about a pending clinical trial that could help babies suffering from RCDP.

Jude will be one of the small faces of that clinical trial.  The hope is it would change his quality of life along with other kids like him.  Dr. Bober cautiously said the test could start as early as April.

“Clinical trials are generally funded by companies that want to sell you a drug,” said Dr. Bober. “This particular drug company really didn’t set off with a tremendous interest in RCDP, they set off with an interest in Alzheimers.”

But their drug being tested seemed to help babies like Jude, more than older adults with Alzheimers.

“We’re sort of in that place where the rubber meets the road,” Dr. Bober said.  “Where we have to plan the trial and do everything the right way.”

Hannah and Sully try to stay grounded, but say it’s hard not to get too excited.

“I know they don’t know if the trial will do everything we’re hoping it’ll do,” Hannah said.  “But they’re pretty convinced a clinical trial will do something, and something for us is everything.”

Until then, it’s just getting through the days.

Every step of the way for a child with RCDP is difficult.  While in Delaware, doctors told Hannah and Sully Jude needed an MRI so doctors could take a close look at his spine.

An MRI – and the anesthesia beforehand – can be critical for a child of this size.

“I get so anxious,” said Hannah as she kissed Jude’s forehead before doctors put him under. “I don’t like not being with him. Even having him go away to be tested for a few hours is unnerving.”

Hours later Jude came out of the anesthesia groggy and having trouble breathing. His family surrounded his hospital bed. He eventually pushed through.

“He always does,” said Sully.  “Sometimes we feel like Jude is the stronger person.”

And that’s what it’s all about, says pediatric orthopedic surgeon Dr. William McKenzie, another one of Jude’s specialists at Nemours. “The coolest thing about Jude – and we see this very often – is how passionate his family is. How much of an advocate they are for their child. Their persistence and searching to find the best for their child is remarkable. They should be congratulated for it.”

To follow Jude on his Facebook page, click here.

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