- Associated Press - Friday, December 16, 2016

BATTLEFIELD, Mo. (AP) - Dante Washington has been gone for three Christmas seasons now - two more than he ever lived through himself. Yet his stocking still hangs above the fireplace in his parent’s spacious Battlefield home.

Dante was born in May 2013 with what doctors later determined to be brainstem disconnection syndrome - a relatively new disorder known to affect just over a dozen people, the News-Leader (https://sgfnow.co/2hJJDsC ) reported. It meant one of the three parts of the stem of his brain was essentially missing.

To Dante’s parents, Eric and Elizabeth Washington, knowing the diagnosis only went so far. When their son died in January 2014, just eight months old, they still had basic unanswered questions.

Nearly three years later, with the recent publication of research that involved their son, the couple feels like they have answers.

“It’s kind of surreal because we didn’t think in our lifetime that they would figure it out,” Elizabeth Washington said in an interview last week. “And they did.”

Dante Washington was always different.

Sure, there was the obvious way. As a result of his condition, he didn’t develop like a normal infant. He was still just nine pounds when he died. Half his life had been spent in a hospital. He had difficulty regulating the temperature of his own body. He had high blood pressure. He had issues with being fed.

But Dante also stood out even when compared to others with brainstem disconnection.

At the time Dante was diagnosed, most babies known to have had the condition had died before turning seven weeks old. Dante lived months beyond that. The other children had essentially never developed at all. Dante was the first known to have purposeful movement. When shiny pom-poms were held in front of him, he would reach for them with his little arms, and he’d smile.

The other infants with the condition were considered deaf and blind. Dante was significantly impaired in those areas as well. Yet he seemed to enjoy watching shows on an iPad. And Eric Washington recalls laying in bed with Dante one day, and making a cooing sound. Dante cooed back.

“It was just like a miracle in itself,” Eric Washington said.

While Dante was alive, his parents worked opposite shifts - Eric at the United States Medical Center for Federal Prisoners in Springfield, Elizabeth at the Ash Grove school district - to ensure someone was always around to care for him.

And he wasn’t their only focus. Dante was the couple’s fourth biological son and they’ve also adopted others - two boys at the time Dante was alive, and a boy and a girl since then. Eight kids in all. They still count Dante.

The couple, knowing that Dante didn’t quite fit the profile of the typical brainstem disconnection patient, constantly reached out to neurologists while he was alive - anyone whose email address they could find. Dr. Andrea Poretti, a pediatric neurologist with Johns Hopkins University in Baltimore, eventually took interest.

Since his death, Dante has been referenced in two case studies published in medical journals. Poretti has been an author on both.

The first case study, published in Neuropediatrics in 2015, essentially entered Dante’s unique characteristics - the fact, for example, that he was able to reach some developmental milestones - into the medical record.

“He broadened the spectrum of the disease in a positive way,” Poretti said.

That means future parents “can see that babies with this can live past seven weeks,” Elizabeth Washington said.

After the first case study was published, Poretti was contacted by a colleague in the Netherlands.

Since the first brainstem disconnection patient was reported about 10 years ago, Poretti told the News-Leader, it’s been unclear whether the condition was a genetic disease - something original to a newborn’s DNA - or a prenatal acquired disease, the result of something that went wrong in the womb.

For the second case study, published in Neuropathology and Applied Neurobiology in November, researchers analyzed the brain tissue of Dante and two other patients.

They were able to conclude brainstem disconnection syndrome was genetic.

It’s not a cure. It’s just another piece of information about a frustrating condition. To the Washingtons, however, it’s a piece of information they thought they might never know. And they know their son directly contributed to the revelation.

“We’ve got a name for the gene that caused this to our son,” Elizabeth Washington said. “And that gives us some closure.”

It’s important to know the disease is genetic, Poretti said, because it means “there may be recurrence in the same family,” and now doctors can inform parents of that fact.

The Washingtons aren’t planning on any more kids - “Eight is enough,” Eric said laughing - but it’s still an important thing for them to know.

“It gives us that information for our kids, to say, hey, this is something that either your father or I carry, that you might pass on to your children,” Elizabeth Washington said.

The Washingtons, kids in tow, visit Dante’s gravesite each weekend. They decorate it differently each season.

The couple still shares the occasional memory on “Prayers for baby Dante,” a Facebook page set up while he was still alive. It has more than 8,400 followers. And Eric and Elizabeth also manage a private Facebook group for those with a child that has brainstem disconnection. It has 25 members, a testament to the rarity of the condition.

Elizabeth Washington said she wants parents to know that “if your child doesn’t fit the mold, there are answers out there, and you’re not just stuck in your local area.”

“I was a mom on a mission for answers, because there were no answers,” she said. “I think that we had to become experts on Dante and that led us to the answers.”

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Information from: Springfield News-Leader, https://www.news-leader.com

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