Make-A-Wish sending Leonard student on Disney cruise

Leonard Elementary first-grader Angelo Orlando can’t wait to take his first trip aboard a big cruise ship.
Leonard Elementary first-grader Angelo Orlando can’t wait to take his first trip aboard a big cruise ship.

Between multiple surgeries and frequent visits to doctors, Angelo Orlando, 7, has had a rough start in life.

But now the Leonard Elementary first-grader is about to have some major fun thanks to Make-A-Wish Michigan.

Angelo and his family will be taking a four-night cruise from Port Canaveral, Florida to the Bahamas aboard the Disney Dream courtesy of the Brighton-based nonprofit organization that grants life-changing wishes to Michigan children battling critical illnesses.

“I’m special,” Angelo said.

Last year, Make-A-Wish Michigan granted a record-breaking 455 wishes, according to its Facebook page. More than 9,000 wishes have been granted in the state since the organization’s founding in 1984.

Amy Orlando said her son is very much looking forward to the trip, which will take the family to Nassau and Disney Castaway Cay, a private island in the Bahamas that serves as an exclusive port for Disney Cruise Line ships.

“He’s on his iPad looking at the boat,” she said. “He wants to go on a floating hotel . . . He loves to swim. He loves water parks.”

“It’s going to be fun,” Angelo said. “I want to leave my bathing suit on all day.”

Angelo was born with a rare condition known as tetralogy of Fallot (TOF) with pulmonary atresia.

It’s a complex combination of four congenital heart defects or abnormalities, including a hole in the wall of muscle (septum) that separates the two lower, pumping chambers, or ventricles, of the heart and the complete obstruction of the pulmonary valve, an opening on the lower right side of the heart that does two things – allows blood to flow to the lungs and helps prevent blood from leaking back into the heart between beats.

“He’s pretty rare,” Amy said.

According to the Centers for Disease Control and Prevention, about 1 in every 2,518 babies born in the U.S. each year has TOF. Of those cases, about 20 percent are born with pulmonary atresia as well.

As a result of this condition, Angleo had his first heart surgery when he was just 7 days old.

He’s undergone a total of six surgeries, the last one being at age 3.

Repairs made to Angelo’s heart when he was 1½ years old are what ended his days as a “blue baby,” Amy noted.

According to the American Heart Association, infants and young children with unrepaired TOF are “often blue” in skin color because “some oxygen-poor blood” gets pumped through the hole in the septum instead of flowing to the lungs.

In addition to surgeries, Angelo’s had about five cardiac catheterizations as well as many other medical procedures.

There will be more surgeries in his future, but how many is not known at this point.

If Angelo’s condition sounds familiar, it may be because just last year, ABC late night television host Jimmy Kimmel’s son, Billy, was born with TOF with pulmonary atresia. Kimmel raised awareness about the condition when he shared the story of his son’s diagnosis and open-heart surgery on his show.

Amy noted each year, Congenital Heart Defect Awareness Week is observed from Feb. 7-14. “No matter what you do (during pregnancy), there are always these risks. It can happen to anybody,” she said.

Despite everything that’s happened to him, Amy said the medical stuff doesn’t get Angelo down. He’s very easy going, so he just rolls with it.

“He is just the happiest person,” she said. “You would think he would hate to go to the doctor because he goes all the time, but he doesn’t.”

TOF with pulmonary atresia did hinder some aspects of Angelo’s development.

“He didn’t walk until he was 18 months (old). He never crawled,” Amy said. “He’s behind as far as gross and fine motor skills.”

To help with this, he receives both physical and occupational therapy.

Although he’s restricted from participating in any contact sports, such as football, Angelo stays active through swim lessons and hip-hop dance lessons.

“He loves to be on the go,” Amy said. “He’s very busy.”

There’s no reason Angelo can’t grow up to be a healthy, active adult.

One of the more famous examples is Shaun White, an American pro snowboarder and skateboarder. The 31-year-old was born with TOF, yet he went on to win two Olympic gold medals for snowboarding in 2006 and 2010, and qualified to compete in the 2018 Winter Olympics next month in South Korea.

Amy said things have been “very stressful” for her and her husband Dan since before Angelo was born. During her pregnancy, the time when other couples are making plans for the nursery, they were meeting with surgeons at the University of Michigan Medical Center to discuss operating on Angelo’s tiny heart.

“(That was) just the beginning of our emotional roller coaster,” she said.

They ended up spending the first nine months of Angelo’s life living at the Ronald McDonald House in Ann Arbor.

When they got home, there was still a lot to deal with between keeping track of prescription medications, weight checks and the fact Angelo was being tube-fed, Amy said.

Given all the Orlandos have been through, Amy views this upcoming cruise as an opportunity for five days of pure “family time” where “we don’t have to worry” about anything and “we’re not looking at the clock.”

“We’re looking forward to it. It will be great,” Amy said.

The Orlando family, which also includes Angelo’s little brother, Vinny, 5, plans to show its gratitude to Make-A-Wish Michigan by participating in the 20th Annual Walk for Wishes – Southeast Michigan on Saturday, May 5 at the Detroit Zoo in Royal Oak. To register, please visit www.walkforwishesmi.org.

The goal of this event is to raise $590,000 to help grant the wishes of Michigan children. More than 650 Michigan kids are currently waiting for their wish to come true, according to the organization’s Facebook page.

 

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