Wish granted: Heart, hydrocephalus patient spends week in Orlando

For one full week in his 11 years, Clovis resident Aiden Tanz was finally able to focus on just one thing: having fun.

Thanks to Make-A-Wish Foundation, a nonprofit that grants the wishes of children with life-threatening illnesses, he was granted a family vacation in Orlando, Florida from Jan. 31 to Feb. 6.

The Freedom Elementary fifth grader was born with hypoplastic left heart syndrome, which means parts of the left side of his heart did not develop completely. After undergoing his first open heart surgery at just two days old, Aiden developed brain bleeding, a form of hydrocephalus, or the buildup of fluid inside the skull. To help drain the fluid, Aiden had his first emergency brain surgery at three weeks old.

Aiden has undergone 29 surgeries since birth.

But on his “Wish trip,” Aiden had no doctor appointments, no hospital visits and no homework. What he did have was seven full days of fun at Walt Disney World, Universal Studios, SeaWorld and Give Kids the World Village — a resort just for Make-A-Wish kids.

“It meant the world to us. He was able to go and be a normal kid,” said Aiden’s mother, Sara Tanz. “A couple of times I had to tell him not to go (on a ride) because of his heart ... He got to focus just on having fun and being with the family. He got to do what he wanted to do. Just watching his face light up all the time — nothing beats it. We’re so thankful that he was able to do this.”

Make-A-Wish paid for all of the expenses, including the flight — it was Aiden’s first time in a plane — lodging, food, gas and souvenir money for the entire Tanz family. Aiden’s four sisters, Chloe, 14, Dakoda, 9, Ashlyn, 7, and Emmalee, 4, went on the trip along with mom Sara Tanz and grandmother Geri Holven. Aiden’s dad, U.S. Navy Chief Tait Tanz, is deployed on the USS Truman.

“He said he didn’t want us to wait because when he gets back from deployment he’s going to go to commissioned officer school,” Sara Tanz said. “And we wanted to go now that Aiden is doing well. He’s never been at this stable a point. I don’t know if he’ll continue to be. I know as he gets older things are going to get rockier for him.”

Aiden has a shunt, or one-way valve, that drains fluid from his skull into his abdomen where it is reabsorbed. When it malfunctions, Aiden must undergo surgery for shunt revision or replacement.

“For the first time since 2008 he made it one year without surgery,” Tanz said. “Right after he made it that year he had a procedure — a heart catheter — done.”

The right side of Aiden’s heart is already becoming enlarged because it’s having to make up for having no left ventricle, Tanz said.

“So down the road he’s going to need further interventions. That could potentially mean a transplant, that could mean further surgeries as they come up with new interventions ... it’s all going to be up to his body.”

Aiden didn’t have any trouble in Orlando.

“We were going from 6 a.m. to 1 a.m. every day,” Tanz said. “You don’t even want to leave Give Kids the World because there’s so much to do there, but then you have to go to the amusement parks.”

The family was able to see and do everything they wanted. Make-A-Wish kids are taken to the front of each line to meet theme park characters, they’re taken through the exits to get on each ride without waiting and they’re given discounts on souvenirs, Tanz said.

However, due to Aiden’s heart condition and seizures, he wasn’t able to ride every ride he wanted to.

“He was a little bummed because he couldn’t ride the big roller coasters because of his heart; he can’t do loop-the-loops,” Tanz said. “He kept saying ‘mom wouldn’t let me do it’ but we saw the cardiologist (after the trip) and the cardiologist said, ‘No, you couldn’t get on those because of your heart.’”

He also couldn’t get on many of the simulator rides at Universal Studios because the flashing lights could’ve brought on a seizure, Tanz said.

Aiden did enjoy the water rides, like Splash Mountain in Walt Disney World, Journey To Atlantis in SeaWorld and Popeye & Bluto’s Bilge-Rat Barges in Universal Studios, Tanz said, noting that the weather was gorgeous throughout the trip.

All of the theme parks went above and beyond to make Aiden’s trip a memorable experience, Tanz said.

Captain America gave Aiden his shield to hold for a photo in Universal Studios and all of the kids were allowed to pet the dolphins and feed the sharks, stingrays and seals in Sea World for free, she said.

Give Kids the World Village specializes in giving Wish kids and their families the best possible stay in Florida.

“That is the most amazing place. They do so much for the Wish kids,” Tanz said. “They put you up in a villa, they have activities every night for the kids. There’s an ice cream parlor and snack shops so they can have ice cream for breakfast, lunch and dinner if they wanted.”

Aiden was even personally tucked into bed by the village’s mayor, a 6-foot-tall bunny named Mayor Clayton.

“It was hilarious!” Tanz said.

Volunteers took photos of the family throughout the stay; a group is working on a scrapbook and a company is creating a personalized song for Aiden.

“He got a star and the star fairy went and put it up in the Castle of Miracles,” Tanz said. “Every Wish kid that goes there puts up a star and it stays there forever.”

The last night of the family’s stay, Give Kids the World Village threw a pirate and princess party and the Tanzes were chosen as the “royal family,” Tanz said.

“Everyone got to dance around them,” she said. “The adults were smiling and laughing just as much as the kids. That was the most fun party I’d ever been to and no one wanted to leave!”

But alas, they had to return home to Clovis. Even then, they experience the perks of Aiden’s wish.

“We had limo rides to and from the airports, which the kids thought was really cool,” Tanz said. “And on one of the flights home they realized we were a Wish family and gave us passes to board first.”

It was a dream — a wish — come true.

“They came home and our living room looked like Disney World and Universal had thrown up in it because they had so many souvenirs,” Tanz said.

The family was also exhausted.

“We got home and they wanted to sleep for like three days,” Tanz said.

This story was originally published February 19, 2016 at 10:43 AM with the headline "Wish granted: Heart, hydrocephalus patient spends week in Orlando."