JENNIE: Amazing Elizabeth! This 7-year-old is not defined by physical challenges, but life adventures

AUGUSTA, Ga. (WJBF)– We are devoting this entire show to follow up with the little miracle child in Augusta.

You first met her back in 2018. Her name is Elizabeth. She’s 7-years-old now, but before she was born, doctors doubted that she would live even 7 hours. Elizabeth was born with a rare condition called Caudal Regression Syndrome. It occurs once in about 100,000 newborns.

Caudal regression syndrome is characterized by abnormal development of the lower spine of the developing fetus. Bones may be misshapen, even missing. Caudal regression impairs the lower half of the body and can cause abnormal development in certain organs. The rectum and anus and leg, joint and bones. This disorder commonly appears in infants who are born to mothers with diabetes.

Watch Elizabeth’s first appearance on Jennie from 2018.

Elizabeth has a really cool wheelchair. And now she has a new bike – an Amtryke- you’ll learn about that a little later. Grandmother Krystina Carrion says it’s a complete circle.

“It really is. She’s wanted the bike. We’ll go to the park. It just makes my heart so happy that she can be included with other kids and what they do and know what it is.”

Elizabeth says she loves to go bike riding in the park.

Elizabeth: “And we, like, go down this hill.”

JENNIE: You go down the hill! Is it scary?

Elizabeth: “No. It’s like I go uphill and when we’re done we go downhill. And then we go back in our car.”

Krystina says Elizabeth has come a long way since the days of her Bumbas chair, made for her in Webster, New York.

“Bella’s Bumbas – they custom made for her. And that chair was reproduced almost 45 times for other children with her condition who didn’t have any clue about it. Because they didn’t fit into the regular Bumbas chairs because of the way their legs are. So she’s been a trailblazer when it comes to my dedication to find things for her that makes her — that gives her some equality with other children.”

JENNIE: And I know one thing you’ve done probably way more than other children is travel. Can you tell me some of the cities you’ve been to and the countries.

Elizabeth: “I’ve been to Paris, London, New York, Barcelona, the Bahamas… It was my first time going on a cruise when we went to the Bahamas.”

Krystina’s goal is to give her as many experiences as she can.

Krystina: “If I’m going to continue living my life and she gets the benefit of going with me. It’s been more challenging to find what is accessible for her. But I think I told you I’m starting a blog that will, like Barcelona, was the most, most accessible place for us to be, from the busses to the trains to everything. London was second because every black cab has a wheelchair ramp. So getting around London was easy. You just had to hail a cab. New York is great to walk around because all the sidewalks have the know. You can go up and down them. But to try to handicap cab, they’ll drive right past you in New York. But that’s New Yorkers for you. But yeah, I mean, it is the cruising has been amazing because she can go anywhere on the boat with the wheelchair.”

AMBUCS Augusta is all about helping people with physical challenges gain mobility and independence. Matt Trainor is the president of the Augusta chapter and director of the Southern Region.

“I joined AMBUCS about 22 years ago, and that was primarily through my daughter, Virginia, who was who was severely handicapped. And so therapeutic equipment was a big part of our life. And when she passed away at the age of five, I decided I wanted to really get into giving back to the community. And so the equipment that the Amtryke was something that I felt like was a great way to serve the community.”

AMBUCS works with physical therapists, occupational therapists, speech therapists. Carol Collica is the Amtryke coordinator for the Augusta area. She meets with the clients and gets them matched with therapists and helps facilitate adaptations or adjustments for the trikes.

“When we met Elizabeth, we had her on a trike and she fit perfectly. But we had that one problem: How are we going to support her legs? So I called our national Ambucs and worked with the engineer there, and he was kind of excited to get this challenge. So he built this platform that fit on her Amtryke perfectly. It fit so that when she’s riding, her legs are totally supported.”

AMBUCS is made up of a nationwide network of volunteer chapters who work in partnership with physical, occupational and speech therapists to provide these and trike adaptive trikes. In the CSRA, they serve Richmond, Columbia and Burke Counties. For more information, go to augustaambucs.org or call 706-589-1211.

Krystina is in the process of creating a blog for parents of children with special needs. She feels she has learned so much in the past 7 years, and navigated uncharted waters, and she wants to create and help be a resource for others.

In the meantime, Elizabeth is looking forward to her summer vacation and a cruise to Alaska!

“I mean, her only limitation is she can’t walk. Her playroom is on the second floor of the house. She will dove into the pool. She swims. You know, she’s — I do not treat her as if she’s handicapped… I make her do everything that she can possibly do when it’s time for dinner, she climbs up onto the chair herself. She gets out of the chair (and back) onto her (wheel)chair herself.”

JENNIE: Elizabeth, I wonder if you would tell a little story about something that happened to you. Remember when you were at the Kennedy Space Center and you met an astronaut? Do you remember his name?
Elizabeth: “Steven Swanson!”
JENNIE: And you told him that you wanted to be an astronaut, right?
Elizabeth: “He said I can go on the moon.”
JENNIE: He said you could be an astronaut because in space, you don’t need what? You don’t need legs!
Elizabeth: “Yeah. You walk upside down, but you’re not falling off.”
JENNIE: Because there’s no gravity.
Elizabeth: “Yeah. Like you can go upside down!”
JENNIE: You have so many things in store and so many adventures, and I can’t wait to see what you’re going to do. We have enjoyed spending time with you!

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