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Ceara H.

The lesser of two evils

It was early 2017, and 14-year-old Ceara was going into the summer on a high note.

She had just won an open water race at Clemson and was preparing for her next swim meet in Orlando.

Sometimes after she emerged from the pool, she would have a hard time catching her breath, a symptom of exercise-induced asthma but not something that particularly disrupted her. So when Ceara came out of the water and seemed to be uncomfortable, her mom didn’t think too much of it at first. 

But this time, Ceara was complaining of chest pressure, fatigue, and pain. Over the next week or so, her symptoms worsened, and she finally looked at her mom and said, “I need to go to the doctor.”

It would be the starting point of a medical journey filled with bizarre symptoms, unexplained illness, and near-death experiences, two of which were separated by a year with no clear link or cause. 

“It was two full years of weird stuff happening,” Ceara explained. “From June 2017 until April 2019, I was hospitalized multiple times with no clear major diagnosis.”

At first, doctors thought it was her thyroid. Then she began to have gastrointestinal issues that kept ramping up, eventually leading to a permanent feeding tube. By April, Ceara was hospitalized and nearly died from sepsis with severe bacteria in her bloodstream. 

She was in the hospital for two months fighting for her life, including recurrent intestinal infections that kept her in the ICU. Finally, she was strong enough for inpatient rehabilitation but left the hospital that year in a wheelchair.

Two years earlier, Ceara was an elite swimmer and athletic freshman. But in the blink of an eye – and with little to no explanation – her life was flipped upside down.

As if that wasn’t enough, then came May 2020.

Ceara underwent abdominal surgery, replacing her feeding tube and reconstructing her GI tract. 

“It was a normal surgery and typical post-surgery recovery,” she told us. “Actually, at about the same time, one of my good friends had her wisdom teeth removed, so we were recovering together.”

But on May 29, 2020, “everything exploded.” Ceara woke up with the worst headache of her life, and while she can’t recall this detail, complained to her mom about chest pain. 

Her family rushed her to the ER. “I don’t want to say thank God for Covid,” Ceara said, “But it probably saved my life that no one was in the waiting room ahead of me that day.”

It would be the last time Ceara was alert and coherent until July.

The details of the events that followed are only in her memory now because they were told to her.

Nurses thought Ceara was having an intense migraine headache. 

They disconnected her feeding tube, and her vitals bottomed out. 

Doctors realized she was in catastrophic heart failure, and she was pushed back into trauma and intubated. 

Ceara’s lungs began to fill with fluid and her organs started to fail. She spiked a fever, eclipsing a critically-high 108 degrees.

Her mom wouldn’t let the nurses leave the room because her daughter’s vitals were so bad. She watched as they placed an IV into Ceara’s neck.

Things were escalating fast, and the hospital wasn’t equipped to handle Ceara’s care. They transported her to a different hospital and considered placing her on ECMO, a form of life support reserved for the most severe illnesses.

Ceara was so critically ill for so many different reasons that it took a full 10 days to figure out what was going on.

When she finally came off the ventilator, she was having vivid hallucinations. Doctors told her mom it was ICU delirium and prescribed anti-psychotics, which caused seizures. It was the first time – but not the last – that she would be faced with the lesser of two evils. 

The seizures were bad, but they led to a brain MRI that showed two small strokes in Ceara’s cerebellum. Would they have found out otherwise?

What confused her doctor, though, was that Ceara had already been on blood thinners, so developing a clot was counterintuitive. That led them to uncovering an autoimmune blood disorder, and Ceara had the first piece of her medical diagnosis puzzle. 

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Ceara was also still experiencing very scary hallucinations.

“It was so disorienting,” she told us. “Because I woke up in the hospital and had no idea what was happening, so once I started seeing hallucinations, I couldn’t determine what was real and what wasn’t.”

Then came the second diagnosis. Ceara had autoimmune encephalitis, meaning her immune system mistakenly attacked her brain cells, causing intense disorientation and hallucinations.

“Again, I still wasn’t alert or aware,” Ceara explained, “But at some point during this time, between about June 5 - June 10, I completely stopped moving. I even stopped breathing for eight minutes.”

As Ceara’s mom, Beth, remembered, a neurologist came into the room to conduct a nerve test and was extremely concerned. Ceara had exhibited no nerve activation anywhere except her cheeks. “At that moment, he just got up and left the room,” Beth said.

What the neurologist suspected – and later confirmed – was that Ceara also had Guillain-Barre syndrome, a rare disorder where the immune system mistakenly attacks nerves.

Ceara likely experienced tingling and muscle weakness, but because she was not alert or coherent enough to describe it to doctors, it had already spread up to her neck and paralyzed her diaphragm. That explained her lack of movement and the eight minutes when she couldn’t breathe independently. 

“I don’t remember much from May 29 to July 4,” Ceara told us. “But the one thing I can’t forget is the pain, the immense pain, of feeling my nerves die.”

When she finally became coherent, nearly six weeks after going to the ER for a migraine, the final pieces of her complex medical journey fell into place. Ceara was ultimately diagnosed with antiphospholipid syndrome, Guillain-Barre syndrome, and autoimmune encephalitis. She had movement in her arms but no improved function in her hands, legs, or trunk.

In layman’s terms, Ceara’s immune system attacked her blood, her brain, and then her nerves, but it wasn’t strong enough to attack germs. That’s what led to her catastrophic heart failure.

“I spent almost six weeks in the ICU,” she said, “Followed by another six weeks doing inpatient rehabilitation, and then 4-6 more weeks in outpatient rehab. I have nerve damage below my elbows and below my knees, and I’m in a wheelchair full-time now.”

For the better part of four years, it’s been an ugly fight. But if anyone has the grit and tenacity to continue pushing forward, it’s Ceara. 

Before what her mom calls “the hurricane,” Ceara had her learner’s permit and was practicing her driving skills. The four years she spent fighting for her life cost her a lot - not just the obvious things, but other moments, too. Getting her license was one of them.

Ceara is now at Georgia State, studying biology. She also just won an award for academics and was named the student of the semester. She has a boyfriend, close friends, and a lot of dreams for her future. 

One of those is getting her license by the end of the summer. It looks a little different now, but Ceara has been practicing to learn how to use hand controls. She has the vehicle, she just needs the necessary adaptations.

With the support of our donor family (THANK YOU!), we were able to fully fund the cost of her vehicle hand controls for a total of $2,332. We have no doubt that she’s got the driving part covered. 

“I genuinely enjoy driving so much,” Ceara said. “I can do a lot for myself. I can be functional at home and other places, but if I can’t get from point A to point B on my own, it’ll never allow me to be fully independent. I’m so excited!”

“She is ready to fly,” her mom continued. “I’m ready for her to fly. Without driving, the rest can’t happen.”

For the girl who’s overcome so much, we can’t let driving be the thing to slow her down. Hand controls today. Independence tomorrow. To all those who helped make it possible, thank you for being part of making Ceara’s world 10% happier. Let’s keep it going, shall we? DONATE HERE.

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