Chambersburg boy with headline-grabbing illness gets a pirate ship

Just as 18-month-old Dontae Jackson had mastered walking, was learning to talk and started doing everyday-toddler things on his own, his newfound independence was stifled in a weekend. 

The Chambersburg boy went from perfectly healthy and thriving to dependent on life support in the days surrounding Aug. 23, 2017, when he was diagnosed with acute flaccid myelitis. 

Often referred to as a "polio-like" illness because it causes weakened muscles and even paralysis, AFM has become a big news story in recent years as it has struck hundreds of children since 2014. CNN, NBC and The New York Times are among the many media outlets that have done stories about it.  

"They said what happened to Dontae was one in a million," said his mom, April Green. 

AFM affects the nervous system, particularly the area of the spinal cord called gray matter, which affects the body's muscles and reflexes, according to the Centers for Disease Control. Although not new, the CDC only started surveillance of the rare condition five years ago and estimates it affects one to two in a million children in the United States each year. There is no cure. 

Dontae's journey with AFM started with a diagnosis of hand, foot and mouth disease, which causes fever, sores in the mouth and rash. But after an afternoon of severe vomiting, Green and Dontae's dad, Donald Jackson, took him to Chambersburg Hospital. But his condition kept getting worse. 

"Then there were like 15 doctors in the room and the next thing I know, we're flying to (Penn State Hershey Children's Hospital)," Green said. 

More:Super-rare genetic disorder traps boy in baby-like body. Will trial surgery help?

Dontae nearly died soon after arriving, and had to be resuscitated - the first of two times. He spent a week on life support. He would ultimately spend about five months overall at Hershey and Shriner's Hospital for Children in Philadelphia, hooked up to tubes and sensors big and small as Green and Jackson worked to keep things normal for their two other kids while the youngest fought for his life. 

Doctors struggled to figure out what was wrong with Dontae, Green said, and ultimately gave him two more diagnoses: enterovirus-71, a respiratory illness, and brainstem encephalitis, which causes trouble coughing and swallowing. According to the CDC, enterovirus-71 can lead to each of Dontae's other conditions. 

A year and a half later, doctors still don't know why this happened to Dontae, who was as normal as any other child before he got sick, Green said. 

"The enterovirus is a normal respiratory virus that goes away. It's not supposed to affect people like that," she said.

More:Make-A-Wish grants Waynesboro boy a bulldog

Beating the odds

Today, 3-year-old Dontae's big, toothy grin and sticky-sweet disposition juxtapose the many medical necessities that keep him going.  

He has a tracheostomy, a hole in his neck to which a tube attaches and leads to a ventilator that helps him breathe. He had been on the vent all the time early on, but today he only needs it while sleeping. 

Because he can't swallow, Dontae has a feeding tube through his stomach. He also uses a machine that allows him to cough. 

To handle all this, the hospital required the family to obtain nurses before Dontae could go home. Now, he has two - one during the week and one on the weekends - who administer his many medications and treatments, follow through on physical therapies and even just play with Dontae to keep him active. 

While the nurses make their busy life easier, Green and Jackson pride themselves on doing all they can to care for their son on their own. Green said Dontae is a daddy's boy, and usually wants Jackson to work with him. 

"His parents are very hands-on with Dontae," said Autumn Ott, Dontae's weekend nurse. 

Despite his medical challenges, Dontae has come to have a mostly normal life. He goes to preschool, accompanied by his weekday nurse Adam Brandt, and is mastering his ABC's and 123's. He loves watching Youtube videos for kids. 

While the doctors did not give a very positive prognosis for Dontae's abilities in the future, his progress so far makes Green and Jackson optimistic. 

More:Mercersburg girl Reese Burdette doing well after kidney transplant

After all, he started walking again after seven months, even though the doctors said he probably never would. 

"His doctor thinks he may have the (tracheostomy) forever but we think differently," Green said. "He's come a long way from where he was. They didn't know if he was every gonna walk again; he walks. They didn't know if he was gonna swallow; well he does swallow here and there.  Everything they didn't know  he was gonna do, he is doing."

Still, Green said the family can't share enough gratitude with Dontae's doctors, including Dr. Gary Ceneviva and Robin Kingston at Hersey and Dr. Bethany Lipa and Dr. Michael Dettorre at Shriner's. She added that Dontae would not have made it if not for Dr. Brian Kipe at Chambersburg Hospital. 

"He is very important to us," she said. 

Make-A-Wish steps in

Few things illustrate Dontae's progress better than the big pirate ship anchored in his backyard. 

The Make-A-Wish Foundation of Greater Pennsylvania and West Virginia recently granted his wish for a pirate-themed play set. The wooden structure is shaped like a boat, complete with three levels, port holes, a mast and sail, and even a steering wheel. It also has swings and an enclosed, winding slide. 

With the help of his dad, he can climb up the ladder. He loves to be pushed in the swing. He is, however, scared of the slide, but Green thinks that is because he doesn't like enclosed spaces. 

While a trip to Disney World or some other grand experience is a popular choice among Make-A-Wish kids, Green wanted Dontae to have something that he will use for years to come. Besides, at his age, he probably wouldn't remember a one-time experience, anyway. 

But for Dontae, the play set serves a bigger purpose. Because he has a weakened immune system, his parents limit his time in public and don't allow other children to come to their house. The play set gives him a way to have fun at home, protected. 

More:6 benefits of a Public Opinion digital subscription

Make-A-Wish Foundation grants wishes  to children with critical illnesses. Green applied on her own after learning about it from someone at work. 

"It's amazing actually that they do that for people," Green said. 

Anyone can refer a child who is between ages 2 1/2 and 18 who has a critical illness. To refer a child, contact Regional Director Ann Waltman at 717-757-9474 or awaltman@greaterpawv.wish.org.