DI teen’s difficult health battle inspires Operation Upright

The brightly-colored rainbows painted on each of her fingernails might be the first hint, but there are other clues to Sydney’s Severance’s vibrant spirit. 

 

These days, her eyes sparkle when she speaks, she can’t stop smiling and her face radiates joy. With that in mind, it’s hard to imagine the battle this effervescent Daniel Island teen was beginning to fight just over a year ago — and how far she has come.  

 

IN THE BEGINNING

 

In March 2020, Sydney was a typical high school student. A sophomore at Bishop England, she loved academics, playing tennis, musical theatre, and outdoor adventures. But she came down with a flu-like sickness that month that knocked her off her routine. She had headaches, nausea, chills, fever, a sore throat and difficulty breathing. It was early in the COVID-19 pandemic and testing wasn’t readily available yet (months later she would test negative for the antibodies). Sydney got better in two weeks, so she and her parents, Ashley and Matt Severance, figured all was good. But the headaches lingered. 

 

“It wasn't that bad,” recalled Sydney, the oldest of the four children in the Severance family. “I was a healthy person. I didn't think much of it.”

 

But over the summer, her symptoms would worsen. In addition to the headaches, she developed extreme light and sound sensitivity.

 

“I am very social,” she continued. “I love to be out and about with my friends and outside and I would have to come home early from things and just want to be in a dark room in the quiet.”

 

Next came vomiting and distorted vision, which led to difficulty reading, watching television or looking at computer screens. Cardboard had to be taped over the windows in her room to keep the light out. 

 

A DOWNWARD SPIRAL

 

By August, Sydney took a turn for the worse. She called her mother and told her she couldn’t drive home from school.

 

“It was vertigo,” said Sydney. “…I started getting very disoriented.”

 

Later that month, a pediatric neurologist would diagnose Sydney with chronic migraines.

 

“It was discouraging, but at least we had something,” she said. 

 

Sydney started a treatment plan, but her health continued to decline and she was forced to drop out of school. The headaches became intolerable, her vision deteriorated, she had loud-pitched ringing in her ears, and began vomiting several times a day. 

 

They were desperate for answers. Ashley and her husband started painstaking research, exploring homeopathic options in addition to traditional medicine. Sydney saw a barrage of medical specialists. Nothing seemed to help -- and she remained basically bedridden and incapacitated in a dark, soundless room, surrounded by dozens of encouraging messages and cards from friends and loved ones that she couldn’t read. 

 

“We were grasping at anything, just to try to figure out what was going on,” said Ashley.

 

Finally, a breakthrough. In November, Sydney went to see a cervical chiropractor, who did a standing x-ray of her cervical spine. It was the first time anyone had done this type of test on Sydney – and it revealed what looked like severe trauma to the neck, specifically in the area of her C1 and C2 vertebrae. The chiropractor did a small, gentle manipulation and she felt immediate relief. But the progress was short-lived. Within hours, her symptoms were back with a vengeance. Two days later, they contacted Dr. Sunil Patel, head of neurosurgery at MUSC, and he asked if they could bring Sydney to his office that same day. 

 

THE RIGHT DIAGNOSIS

 

Patel repeated the X-rays and diagnosed Sydney with Ehlers Danlos Syndrome Hyper Mobile Joint, a connective tissue disorder, but he suspected she may also have Craniocervical Instability (CCI). 

 

“She was declining,” Patel said. “By the time I got to see her she was just in bed, curled up and couldn’t do anything — couldn’t sit up, couldn’t walk, couldn’t stand.” 

 

To confirm CCI, a type of loose ligament condition that can cause injury to the nervous system, she would need an upright MRI. For the test, patients sit or stand upright as opposed to laying down, which puts weight on the spine and can allow better detection of abnormalities. The only upright MRI in the state is located in Greenville. 

 

A generous friend flew them to Greenville for the test. The results were good, noted Patel, but inconclusive. So after waiting a week or so for Sydney to recover, they traveled to Baltimore, where she was able to get another, more detailed upright MRI. Combined with the clinical diagnosis, Dr. Patel now had compelling evidence it was a structural issue. Sydney’s condition had caused the ligaments in her neck to  loosen – so much so that there was little holding her skull in place.  

 

“This is not a torn ligament, but what we call a lax ligament,” explained Patel, who is one of only a handful of surgeons in the world who treat the disorder. “Instead of the ligament being like a rope, it’s like an elastic band. And you can’t have elastic bands holding one bone to another.”

 

The CCI had allowed kinking, stretching and twisting of Sydney’s brain stem, a debilitating complication that explained many of her symptoms. If physical therapy is not successful, a skull to C3 neurosurgical fusion, a major surgical procedure involving adding a metal plate at the base of the skull and several screws to keep things in place, would be her best chance at alleviating her symptoms. But it was not without risk and would bring a long and painful recovery. 

 

“Basically, you’re welding the back of your head to the top of your neck,” Patel said. “And that’s a drastic procedure to consider for any age, but especially a young lady like Sydney.” 

 

By the month of December, Sydney lost the ability to walk and her pain escalated to new heights. She could no longer regulate her body temperature, developed severe stomach pain and labored breathing, and she couldn’t sleep. The surgery was scheduled for January 14, 2021. 

 

“She was like a brave soldier that you bandage up,” Patel recalled. “She got up, she picked up her sword and within weeks was doing stuff that I couldn’t imagine someone in her condition would do.”

 

Today, with five months of recovery under her belt, the surgery has been deemed a success. 

 

“I’ve treated patients for over 30 years, thousands of patients, and there is one thing common to patients who do very well, other than of course a good diagnosis and good treatment,” Patel continued. “…and that is their will to improve and their spirit to improve. And Sydney is the most positive kid her age that I’ve ever met.”

 

Although she will always have limitations in turning her head, Sydney is walking again, most of her symptoms have dramatically improved, and life is back to some semblance of normalcy. 

 

She is also continuing her therapy with local Physical Therapist Susan Chalela on Daniel Island. Chalela specializes in EDS patients, so she has a special skillset for Sydney’s care. 

 

OPERATION UPRIGHT LAUNCHES

 

If the rainbows on her nails are any indication, Sydney knows there is treasure to be found at the end of almost every journey. She intends to use hers — a new lease on life — to help others. Sydney recently launched Operation Upright, a campaign to raise money to purchase an upright MRI for MUSC. Not only will the device assist those with CCI and other debilitating neck or back injuries who desperately need an accurate diagnosis, but it will also serve as a valuable research tool. The machines cost about $1.2 million — and already the campaign has brought in over $100,000. 

 

For local patients, as well as those who travel from all over the country to see Patel and Chalela, having an upright MRI close by will be a 

game-changer. 

 

“I hope it will help the next person who comes to Charleston looking for answers or a diagnosis,” Sydney said. 

 

“I’ve talked to a lot of neurosurgeons in the Charleston area who wish they had an MRI that did upright imaging,” Patel added. “…Sydney is going to in a very indirect and in some cases a very direct way change healthcare in the Charleston area.”

 

Today, in addition to her work for Operation Upright, Sydney is hoping to start some new low-impact hobbies, such as fly fishing and scuba diving. And she plans to be back at Bishop England full-time as a junior next month with a new outlook and plenty of lessons learned from her life-changing experience.

 

“I really learned the difference between suffering from an illness and living through an illness,” added Sydney, who is contemplating a career in medicine. “... I just want to turn it around and make some good come out of what I went through. And to be grateful for good health. I will never take good health for granted ever again. I feel so lucky.”

 

To learn more about Sydney’s journey or to make a donation to Operation Upright, visit sydneyseverance.org.