‘A great big world out there’: 12-year-old Gladewater girl’s wish for Disney trip granted

Published 5:35 am Monday, April 17, 2023

GLADEWATER — Tiffany Wolven sat surrounded by family, caretakers and Make-A-Wish Foundation representatives Friday at Pizza Hut in Gladewater as she celebrated her Disney World dream coming true.

Tammy Wolven describes her daughter as a miracle and considers it a milestone that she’s lived to be 12 years old. Tiffany is nonverbal and nonmobile and lives with Meckel-Gruber syndrome, Arnold-Chiari malformation Type III, Sandifer syndrome, a GI disorder and epilepsy. She’s had an array of orthopedic, stomach and brain surgeries and has a ventriculoperitoneal shunt that removes pressure on her brain.

When she was 14 weeks pregnant, Wolven began feeling tired and fatigued. After multiple visits to the emergency room, doctors confirmed via an ultrasound that a suspicious spot had shown up on the back of Tiffany’s head.

After Wolven visited her obstetrician-gynecologist, she was told that Tiffany had an occipital encephalocele, which is swelling of the occipital bone. 

Wolven was told the spot was terminal and there was nothing doctors could do to help. She was recommended to abort the pregnancy to avoid more complications. This didn’t stop her and her husband, Michael, from seeking other options. 

“We wanted another opinion and didn’t wanna lose hope because I had lost a child in 2006 shortly after being born, and after losing my son, I didn’t wanna lose my daughter,” she said. 

Despite feeling like doctors had given up on her, Wolven found one in Houston who agreed to see her. She was sent to the Texas Children’s Hospital in Houston where additional testing showed Tiffany’s spot wasn’t as severe as she was previously told.

“We wanted to give her a chance to make it,” Wolven said. “We knew we had an uphill battle at that point, but we were willing to give that fight and make that commitment to her.”

Tiffany was originally to be delivered via C-section in early December 2010, but after experiencing a severe case of life-threatening eclampsia a month earlier, Wolven had to be life-flighted from Tyler to Houston During the flight Wolven’s blood pressure stayed elevated, and she had several seizures. Doctors told her husband she was in grave condition and might not survive the flight. 

After landing in Houston, Wolven gave birth to Tiffany, who was born premature and in critical condition. Tiffany had her first brain surgery to remove the encephalocele at 10 weeks old. She stayed in the NICU for the first four months of her life while Wolven spent two weeks in the ICU from her eclampsia complications. 

“The first time I saw Tiffany was on a video on a television linked to the NICU,” she said. 

Her numerous health conditions doesn’t mean Tiffany is inexpressive, however.

She communicates through squeaks, squeals and giggles, Wolven said. Tiffany is aware of her environment and what’s going on around her. She likes to be involved and wants to interact with things, she said. She loves everything Disney related, from Mickey Mouse to “Frozen” and more. 

Since 2017, Wolven has been in discussions with the the Northeast Texas division of the Make-A-Wish Foundation to get Tiffany nominated for a wish. A year later, Wolven received confirmation that her daughter’s wish to go to Disney World would be granted.

They were set to take the trip in 2018 but scheduling conflicts pushed it to 2019. In 2019, required paperwork wasn’t submitted on time, which pushed the trip to 2020, when the COVID-19 pandemic hit.

The trip is set to finally happen next week when the Gladewater family flies to Disney World in Orlando, Florida. It will be Tiffany’s first time flying and the family’s first time to Florida, Wolven said.

She hopes the Disney experience helps Tiffany “see that she’s not just isolated in her safety bubble, that there’s a great big world out there that she can open up and be a part of.”

Wolven believes the trip will offer an opportunity for her family to reset, since daily life is often filled with doctor visits, hospital treatments and more that is draining physically and emotionally. 

She thanks the staff at Make-A-Wish for granting Tiffany’s wish, working with her doctors, coordinating plans and allowing the Wolvens to focus on being a family.