Paul, age 8, is getting ready to take the trip of a lifetime! In two short weeks, Paul, his entire family (mom, dad, older brother and sister), as well as three of his nurses, are flying to Orlando to experience the wonderful world of Disney, thanks to the Make-a-Wish Foundation.
“Paulie,” as his family and friends fondly call him, can’t wait to experience Disney World!
Even though Paul can’t communicate by talking, he has a unique ability to make people feel comfortable or loved simply by the look in his eyes and his high-pitched vocalization that makes everyone laugh. (Once you get to know him, Paul also has quite the attitude that he uses to help get his way!)
Paul has overcome many obstacles to get to where he is today. At birth, Paul was placed on bilevel positive airway pressure (BiPAP) and was diagnosed with Nemaline Myopathy, a neuromuscular disorder that causes muscle weakness. In May 2011, Paul transitioned over to a tracheostomy and dependence on mechanical ventilation.
“The good news is that he’s doing very well,” his mom, Irene says. And she’s right, Paul hasn’t had an unplanned hospitalization since he came home in 2011.
Going to School
Paul makes friends wherever he goes, and school is no exception! Paul is very vocal—and interacts with his peers, nurses, family and friends using his eyes and a communication device, called the DynaVox. Paul’s strong personality helps people feel connected, even if he can’t move or speak the way most kids do.
Jessie, RN, who frequently takes Paul to school says, “Although he cannot speak using words, that doesn’t get in the way of communicating with other people.” She continues, “For example, he makes loud vocalizations and rolls his eyes when you put in the wrong DVD or laughs when you play music and read books.”
Irene and his nurse for the past four years, Shania, remember his first day of school. Paul felt people looking at him differently, but, by the end of that first day, he quickly won over many of his classmates.
“Kids are really curious,” Shania explains. “But they were hooked once they saw how much fun Paul is.”
It means the world to Paul’s mom now that he’s able to attend school and make friends.
“What’s the point if he’s not engaging in school and having fun?” Irene says.
Paul is in a cross-categorical classroom and attends school three days every week. In the fall, he’ll start attending school every day.
Pauly’s Social Life
“We love taking Paul on trips!” Irene’s face lights up as she begins to name all of their favorite spots: “The Brookfield Zoo, Museum of Science and Industry, Shedd Aquarium, and even up to Wisconsin to see his team of doctors and specialists.”
You can tell that Paul inherited his sense of adventure from his mom who continues to dream up new day trips and activities for him to experience.
“I’ve seen way more of Chicago because of Paul and his mom,” Shania laughs.
Paul loves to do anything that involves the outdoors. His mom is currently trying to find a way for Paul to experience riding in a convertible!
Disney will be no exception. With help from his nurses, Paul will experience first-hand some of his favorite things—Diego (a character from Dora the Explorer who, like Paul, is also 8 years old), Mickey Mouse, parades, theme parks, and the world-famous fireworks display.
“We’ve done a lot of research to identify what activities are wheelchair-accessible,” Shania says. “This time is so precious to Paul, we want to do it right!”
More Than Just Nurses
“I am so grateful for our incredible nursing team,” Irene begins. “They are so much more to us than just Pauly’s nurses.”
Thanks to the wonderful people and technology in Paul’s life, he is truly living life without limits.
We know Paul and his nurses will have an incredible time fulfilling his wish at Disney! Stay tuned and we’ll share photos of their trip when they return…
Thanks for sharing this story. It made me cry because it reminded of so many pt I have worked with that can’t communcate like others. They try so hard to be understood . I also glad to hear how their parents/nurses try hard to give them a voice, see and be apart of the world
Thank you for your comment! We’re glad that Paul’s story touched you!