San Antonio – After spending 113 days in the hospital, a San Antonio teen suffering from a rare neurological disorder is finally home just in time for the holidays.
Caitlin Barker, 15, is now at home bedridden barely able to move and talk. Her battle started when she was rushed to the emergency room in July after she woke up one morning and couldn’t walk.
“I fell and I couldn’t walk down the stairs. My chest was hurting from respiratory issues. I went to the ER and a couple of hours there, I couldn’t walk at all. By the next day, I was paralyzed from the neck down," she said.
Test after test, doctors could not figure out what was wrong with Caitlin. Her father, Kirk Barker, said doctors did a process of elimination and came to the conclusion that it was GBS or Guillain-Barré syndrome, a disorder that causes the immune system to attack itself, ultimately causing a person to become paralyzed.
Caitlin, who was a very energetic, active student, said her condition was beyond terrifying.
“It was really scary because at first, I thought it was just going to be my legs, but then I started feeling it in my fingertips, and then having to have all of the masks on my face for my respiratory needs was very claustrophobic,” she said. “It was frustrating. If I was uncomfortable and I needed something, I couldn’t communicate with people. I still can’t really write. Usually, like big letters I can write, but it is sloppy. I can type on my phone with my left hand, but I can’t do much with my right.”
Unfortunately, Caitlin’s parents would soon learn that it wasn’t GBS taking a toll on their daughter’s body after all.
“They treated her with GBS and she started to improve to the point that she could be discharged to an inpatient rehab facility,” her father said. “They ran another MRI on her and previously, it was clean, but this time, it showed an issue in her spinal cord that was from her brain to her middle and lower back.”
Doctors later concluded that Caitlin had Transverse Myelitis, not GBS.
“They said based on the MRI, it was one of the worst cases they had ever seen. Normal cases are two to three vertebrae affected and this was over 7 vertebrae affected,” Kirk Barker said.
“It is inflammation in the spine and the myelin in your spine is damaged from that inflammation,” said Chassidy Barker, Caitlin’s mom. “That caused her to not be able to walk and move her legs."
Chassidy Barker said the doctors told her that Caitlin’s condition happened abruptly.
“Hers is idiopathic, meaning it just happened,” Chassidy Barker said. “Nothing caused it. They ran every possible test. The infectious decease was called in. You name it.”
Caitlin suffered from more problems because of her condition. She dealt with a collapsed lung, as well as a severe wound that developed on her lower back. Through it all, she didn’t give up during physical therapy.
First time using a scissors since June. We are making a slinky dog today then get to participate in the blessing of the therapy dogs.Posted by Kirk Barker on Friday, October 4, 2019
“We would do various exercises to try to get me to sit up,” Caitlin said. “They would use this machine with electrodes that would open my hand so I could grab stuff with it. It was very difficult at times, but it was nice getting results even if it was a slow process.”
Before, Caitlin couldn’t talk because the disorder was deeply affecting her body. But she kept pushing even though she couldn’t say anything.
Caitlin update. Each day slightly better than the previous. Caitlin was able to hold her head up for 20 seconds today. Still having lots of pain and anxiety but she is working hard to get better. Thank you for your prayers and support. Minimum of 5 weeks to still be in the hospital. Today is Day 61 in the hospital. God bless.Posted by Kirk Barker on Monday, September 2, 2019
“Just seeing everyone around made me made me kind of want to fight harder to be able to do more,” Caitlin said. “The thought that I could recover, even if there was a chance that I couldn’t, still made me want to try.”
When Caitlin was able to start speaking again, some of her first words were telling her dad that she loved him.
“Just getting to hear her say ‘I love you dad’ was very nice,” Kirk Barker said. “I think allergies got a hold of me pretty good because my eyes just watered a little bit,” he said jokingly. “It just hurts to see your baby like that.”
No words needed for this update. ❤️❤️❤️ Day 28 in ICU God is goodPosted by Kirk Barker on Thursday, August 1, 2019
Caitlin being able to talk wasn’t the only thing that makes her parents emotional. Caitlin getting her movement back is another improvement that brought them to tears.
“It was amazing watching her go from barely able to move anything to where they had to hold her head up, to just starting to get some function back,” Chassidy Barker said. “She is just one determined young lady. She has extremely made me proud to be her mom.”
Caitlin’s father said it was their faith that has brought them through this battle.
“I told her your purpose before may be different than what your purpose is now and whatever your purpose is we will do our best to help find that purpose and help you shine and get you what you need,” he said. “Whatever God has intended for you, good or bad, we’ll make sure we give him all of the glory.”
He said this is also an inspiration to anyone to never give up.
“We only fail when we give up,” Kirk Barker said. “So, we took fail and turned it into an acronym. First Attempt in Learning. So, we may not figure it out this time, but we will figure out another way to do it and we will keep going until we do.”
Caitlin has been home since October 23 and though her new normal is different from life in the past, Caitlin said she is happy.
“It was very different being in the hospital because I have never stayed in one before and being in there for so long, I kind of just forgot things and I’m getting used to being back to normal. I can’t really open my fingers that much and then my legs, they will move on their own sometimes, but I can’t move or feel them.”
She said in addition to going back to school, she is excited about doing other activities she loved.
“Being able just to walk into places, like a mall or something,” Caitlin said. “Go skating, being able to go to a water park. I love waterparks.”
She said she has learned to never take simple things such as walking for granted again.
Expanding her chest to force her to take a deep breath. When I see this I couldn’t help but think of Master of Disguise with Dana Carvey. TURTLE. Are you too turtley for the turtle club.Posted by Kirk Barker on Friday, August 16, 2019
“Honestly, sometimes it feels like, all like a dream and just being able to do some of the normal stuff I used to do, makes me feel a lot better,” Caitlin said. “I would get so stressed out in my classes and things like that, but going through what I have been through, that doesn’t’ bother me anymore. When I had problems with my lungs, it was very scary. Just knowing how bad I used to be and how much better I am now, makes me happier to see I am not so helpless. Even though I had issues before and setbacks, I recovered from those, so I will recover from this one.”
The Barker family has also received so much support during Caitlin’s journey. They have received monetary donations for her expensive medical needs, they have received food donations, and most importantly to the family, they have received prayers.
“It has been very emotional,” Kirk Barker said. “It was so touch and go for a while. We hope to inspire people to never take stuff for granted and to be thankful for what you do have because it may not be there tomorrow. We thank God through the good and bad.”
Caitlin still has to undergo more surgeries before she can get a powerchair and become mobile on her own again. She said she looks forward to that day, as well as the puppy her father promised her when this journey began.
Doctors are not sure when or if Caitlin will be able to walk again. The family said though they have a long recovery ahead of them, they are just happy that she is back home in time for Christmas.