Family raising awareness about rare disorder after daughter unexpectedly paralyzed

By Japhanie Gray - Reporter, Jennifer Galvan - Photojournalist

SAN ANTONIO - A San Antonio 15-year-old is still recovering in a hospital after finding herself unexpectedly diagnosed with a rare disorder that causes her body to attack itself.

Kirk and Chass Barker, parents of Caitlin Barker, said they had no idea what was happening to their daughter because it came out of nowhere.

“It was last Tuesday,” Chass Barker said. “My mom was in town, and we all went to the movies and then the mall and out to eat. It was a fun girls' night, but later that night, Caitlin started to complain about her legs and that they were hurting and she felt like she had heartburn.”

Chass Barker said she gave Caitlin Barker some medicine, thinking it was nothing serious, and she went to bed. The next day, things worsened.

“I didn’t see her coming down the stairs, but when she was walking, she was so wobbly,” Chass Barker said. “She couldn’t hold herself up at all. She had to hang onto things. She was in so much pain.”

That is when Chass Barker said she took her daughter to the emergency room.

“While she was there, she said her fingers were hurting and her eyes were burning, so I had to wheelchair her in,” Chass Barker said. “There were running tests and did a CT scan and thought she had Guillain-Barre syndrome but wasn’t quite sure. They said she needed to be transferred to Methodist Children’s Hospital for observation and that she would more than likely be there overnight.”

More tests were done on Caitlin Barker, including an MRI and spinal tap. At that point, Chass Barker said the pain was going up Caitlin Barker’s body and she began complaining that her arms were hurting.

“She was able to eat, but she couldn’t hold any food on her own,” Chass Barker said. “Then she was getting sick, and the next day she woke up and she was like, ‘Mom, I can’t feel my arm. I have lost my arm.’”

Her parents said a neurologist came to do testing. They said Caitlin Barker had no feeling in her legs and by Thursday of last week, she had to be moved to the intensive care unit because her breathing became so bad after it spread to her shoulders.

“We were told we were lucky we took her to the ER sooner rather than later because most people with GBS, within 24 to 48 hours, they can suffocate themselves,” Chass Barker said. “Basically, the body is attacking itself.”

According to the Centers for Disease Control and Prevention, GBS is an autoimmune disorder that causes a person’s immune system to damage nerves and weaken muscles to the point of paralysis sometimes. Though doctors are not sure how Caitlin Barker contracted GBS, the CDC says it is usually triggered by one of several things, such infections like the flu, Zika virus, Cytomegalovirus, Campylobacter jejuni and more.

The CDC also says GBS is so rare, only 1 in 100,000 people are affected, with an estimated 3,000-6,000 people contracting it each year in the United States.

“When I first saw her, she couldn’t move at all,” Kirk Barker said. “It was horrible to see. All I could see was paralysis. Just as a parent to sit there and see your daughter go from being a busy body, active, can’t sit still to just lying in a bed overnight, paralyzed, can’t breathe on her own, can’t eat on her own, it is not something anyone would want to go through.”

Kirk Barker said it has been especially hard not hearing his daughter’s voice in over a week.

“I have just been playing this family video over and over that we made about trusting in God,” Kirk Barker said. “Just so I can hear her voice. It has a different story now because you still hear about God’s grace. I just look at all the people I have been praying for, and so many people have reached out from all over after seeing her story.”

Caitlin Barker is described by her family as a hardworking go-getter who loves science and aspires to be a neurologist one day. She is very active in school and always trying to find ways to stay busy.

“Everything she does, she always puts 100% into it, so to see her like this is really, really hard,” Chass Barker said.

“She is just a blessing to call my daughter,” Kirk Barker said.

Now, as the family continues to stay strong while Caitlin Barker fights for a recovery, they hope to raise awareness about GBS.

“God is well known at taking tragedy and turning it into triumph, and we can’t wait to see what he has in store for this,” Kirk Barker said. “No matter the outcome, it will be used to bring glory to his name. Whether the outcome is good or bad, we are just going to do what we can do to follow the path he has put us on.”

They said no matter what, if there is any concern related to GBS symptoms, which the CDC says usually start with weakness and a tingling sensation in the legs, go to the doctor.

“It is so rare that is it easy for the symptoms to get overlooked,” Kirk Barker said. “Time is of the essence. We are hoping people see this and get familiar with what can happen. We would hate to see anyone die from this.”

Caitlin Barker is expected to stay in the hospital for at least two months.

“When I saw her, I could see her mouthing,” Kirk Barker said, holding back tears. “That is about the best she could do because she has a tube in her mouth, and she said, ‘I love you, Daddy,’ and she wanted to have a daddy/daughter date when she goes home. It is just weird to see this happen because we went about our normal day and then come home and wake up the next day and can’t even walk.”

“I am so happy I took her to the ER when I did,” Chass Barker said. “She may not have been here today if I were to have waited. I am so glad I took her because I don’t think she would have been here. There is no way she would have made it another day.”

The Barker’s last piece of advice for everyone is to have faith.

“Trust in the Lord,” Kirk Barker said. “Good or bad, give thanks for anything you go through. It makes it a lot easier to be strong and be there for each other. That foundation is going to help you get through the tough time."

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