East Texas child, Trisomy 18 survivor gets trip to Disney World through Make-A-Wish

Published 3:35 pm Friday, March 29, 2024

A dream came true for Marshall kid and Trisomy 18 survivor A’Shana Williams, as she and her family recently journeyed on a magical trip to Walt Disney World thanks to the Make-A-Wish Foundation.

“The highlight of this trip for me was seeing her respond … how she responded to these life-sized characters that she watches day in and day out; and to see how she had engaged with Mickey and touched his nose and hand and all of that. That was worth walking the park!” said Mona Langston Bradley, A’Shana’s grandmother and guardian, who accompanied her on the trip.

Bradley said her 11-year-old granddaughter has always loved Mickey Mouse and watches the animation faithfully every day. The cartoon has always been her favorite. The first time she saw it, Bradley said she recalls her nonverbal granddaughter kicking with joy.

“I wanted to see how she would react to seeing Mickey in person,” said Bradley, sharing they have more than 120 episodes recorded at home. “I wanted her to experience seeing life-sized Mickey and Minnie.”

“I thought that was the best thing because when I first got her I was trying to find something that would be user friendly for her. So I started with Jake and the Neverland Pirates. I started with Mickey and Minnie and Doc McStuffins, but it had gotten to the point where every time Mickey came on, she would just start kicking her little feet and I would call her ‘happy feet.’ I said OK, so this is the one you like,” recalled Bradley.

Considering the fact that A’Shana is nonverbal, it melted Bradley’s heart to see her actively engaging with the Disney character.

“It had me in my feelings,” said Bradley. “She’s not verbal, but she demonstrated that she knows Mickey Mouse and she liked him by playing with him. I couldn’t be more excited.”

Bradley said she was tickled pink to learn that A’Shana wasn’t too fond of Minnie.

“GiGi always wondered, was it Mickey or Minnie? But the way she kept her back to … She was grunting… She didn’t want to touch her. She wasn’t fooling with her,” Bradley, affectionately known as “GiGi” chuckled.

A Dream Come True

The once in a lifetime experience was made possible by the surprise recommendation of A’Shana’s neurologist specialist, Dr. Andrea Lowden, at Children’s Medical Center in Dallas.

“A few years ago, her neurologist put her on the Make-A-Wish list. I got a call out of nowhere, wasn’t expecting it; the doctor never even told us,” Bradley recalled, noting that was back in 2019.

After her approval in 2019, however, A’Shana’s opportunity fell through the cracks as the program lacked sufficient volunteers, said Bradley.

When COVID struck, all traveling ceased, but the foundation did offer to surprise A’Shana by sending a life-sized Mickey to Bradley’s home. The grandmother decided it would be more meaningful to patiently wait to travel to Disney World to meet her favorite characters in person.

“I said she’s too in love with Mickey with all these episodes we’ve got recorded and stuff,” said Bradley. “I said no, we want to take the trip. I said and I promise you it is not for me because I’ve had two hip surgeries. And I can’t walk the park, but I feel like it would be a once in a lifetime opportunity for her. So I want to make it happen.”

A’Shana, along with her family and nurse Ixcel Aguilar were finally able to make the trip Feb. 29 through March 6. The one-week all-expense paid trip occurred at the perfect time, as it was right before spring break and on the heels of the national observation of Trisomy 18 Awareness Day, observed March 18. March is also national Trisomy Awareness Month.

To mark the special occasion, as a first-time flight for most, A’Shana had the honor of visiting the cockpit and the pilot as she exited the flight. To further accommodate the special guest, volunteers in the airport welcomed her with a warm greeting with her name.

“It was phenomenal,” Bradley said of the overall experience, noting they even provided them with a car seat. “They were real friendly. And everybody was accommodating.”

The grandmother said while the noise of the excitement of a theme park did become a bit irritable for A’Shana at some point, the Mickey Mouse fan did pause her focus from her iPad once she saw the giant mouse.

“She doesn’t do well with noise. We had to put headphones on and we took her iPads, so she watched Cocomelon most of the time. But when she responded to that one thing I knew she understood,” Bradley said of A’Shana’s interaction with Mickey.

“Of course I know she understands anyway, but her interaction with Mickey lets me know that she understood that ‘Yeah, he’s so big now. He’s a big guy!’” the grandmother beamed.

The trip to Disney World through Make-A-Wish definitely proved to live up to its beloved reputation as “The Most Magical Place on Earth” as A’Shana visited Magic Kingdom, SeaWorld and the aquarium.

Bradley was thrilled to share the journey on her personal Facebook page.

“She’s the Facebook baby. I have shared her journey with everybody because she’s a blessing, just because man said she wasn’t supposed to be here still,” said Bradley. “But it was nobody but God — nobody.”

The Make-A-Wish dream come true served as a testament to A’Shana’s life as it celebrates her beating the odds.

“She’s 11. But, I’ve had her for 10 years. I got her from my daughter in May 2014. I give God all the glory. I believe He kept me here to take care of her,” said Bradley.

“Trisomy 18, it’s where they have that extra set of the third chromosome. Ashana did not have the full extra set. I think that’s why it did not show up in all of her prenatal because I went to all appointments but one,” said Bradley.

“Doctors say that these babies don’t make it out of utero (the womb), first. Then they say, if they do, they are going to the NICU because they have respiratory and heart problem automatically. It goes with the territory,” explained Bradley. “And they say they won’t make it out of the NICU (The Neonatal Intensive Care Unit). If they do, then they say they won’t live past a year old.”

But, with A’Shana, “We have a testimony,” said Bradley. “You can’t beat God’s giving.”

Spreading Awareness

As a grandmother who has seen two grandchildren with the rare chromosome disorder, also known as Edwards Syndrome, Bradley said she strives to share as much awareness about the disorder as possible.

“My grandson, A’Shana’s brother, (A’Meir Jacolby Williams), was born sleeping. He didn’t survive,” said Bradley. “A’Shana, we didn’t know anything about hers until after she was born but A’Meir his abnormalities were actually showing up in utero.”

And because there’s a lack of information on the condition, Bradley said she shares all she can about her journey with A’Shana to inspire others.

“There’s not a lot of research been done on it,” she said.

“The Facebook site that I’m on, I read a lot of parents said that doctors just tell them to terminate, because these babies are labeled as not compatible with life. But that’s the lie they tell. A’Shana is very compatible. She’s very smart. And I think they’re more compatible than we are because they understand that we don’t speak their language,” she said. “So they know how to go that extra mile to get you to understand.”

Thus, “I’m a voice for the voiceless,” said Bradley.

“And my baby needs me. It is my job to see that she has as close to a normal life as she can. God has made me steward over her life. I’m going to take care of her,” the grandmother said.

Bradley thanked Dr. Lowden for thinking of A’Shana and submitting her name for Make-A-Wish. The grandmother said Lowden has treated A’Shana since about a month old. And not only has she’s been with A’Shana since birth, she’s also been there her entire career, starting as a resident at Children’s Medical Center to a fellow and doctor on staff.

“Dr. Andrea Lowden is who we owe for this,” said Bradley. “She’s been with us from day one — 11 years. A’Shana has some good doctors. All of our doctors have been phenomenal.”