OPERATION UPRIGHT

A fundraiser established by a Daniel Island teen to bring an upright MRI machine to the Medical University of South Carolina just got a major boost. 

 

According to a press release issued by MUSC, an anonymous donor has offered to match up to $600,000 in donations to “Operation Upright,” a $1.2 million campaign launched by Sydney Severance last year after she was diagnosed with Ehlers Danlos Syndrome with craniocervical instability (EDS/CCI).  

 

“It is overwhelming to me that someone could be so generous,” Severance said. “It felt a bit surreal receiving this news. Perhaps it is similar to how one feels when they win the lottery ... stunned. This act of kindness is something I will never forget.”

 

In 2020, Severance went from being an active Bishop England High School student and competitive tennis player to wheelchair bound. After months of debilitating pain and no answers, Sydney and her family turned to Sunil Patel, M.D., chair of the Department of Neurosurgery at MUSC. Patel suspected EDS/CCI and ultimately diagnosed Sydney with the chronic connective tissue disorder. Her condition had caused the ligaments in her neck to loosen — so much so that there was little holding her skull in place.  

 

Patel recommended Sydney get an upright MRI because traditional MRI studies are unable to detect CCI. But there isn’t an upright MRI available in the Charleston area, so the Severance family had to take on the added stress and cost of traveling, which can be extremely painful and beyond reach for many patients. It often takes years, even decades, before patients receive a diagnosis of EDS/CCI. 

 

“It has been overwhelming to hear from so many people who have suffered because Charleston didn’t have an upright MRI,” Severance added. “By suffer, I mean being in pain for years without the right diagnosis or treatment.”

 

One of the ways Severance has been fundraising is to speak to audiences to share her medical journey. Over the summer, she even had the opportunity to speak alongside Miss America, who also has EDS. She has also been inspired to see the creative ways “good people in this community” have rallied to support her efforts. One of her close friends made pink “Operation Upright” bracelets and raised over $1,500 selling them to Bishop England students. Additionally, some local elementary-aged children held a lemonade stand and donated the proceeds to Severance’s campaign.

 

“There are so many examples like this that encourage me forward,” she said. 

 

Severance continues to face challenges brought on by her condition. After undergoing a skull to C3 neck fusion in January of 2021, she had “a remarkable recovery,” she said. But last summer and fall she began to have gastrointestinal issues that put her on a feeding tube for over a month — and just last month she had surgery to release a tethered spinal cord. 

 

“Sadly, I am wheelchair bound again, but I have a terrific physical therapist on Daniel Island, Susan Chalela, who is helping me regain coordination in my joints,” Severance said. “On an exciting note, the Norris lab at MUSC is doing groundbreaking research on EDS and

I am looking forward to getting stronger, so I can be part of this effort as a volunteer.”

 

In the meantime, her quest to bring an upright MRI to Charleston is continuing full steam ahead. 

 

“A standup or upright MRI can scan patients in any position, allowing it to detect problems that can’t be seen when a patient is lying down,” said Patrick J. Cawley, M.D., MUSC Health CEO and vice president for health affairs at the university. “It’s also significantly more comfortable for patients who may be claustrophobic or overweight. Making this advanced technology accessible to our patients is a top priority. We’re grateful to Sydney and the Severance family for helping to make that possible.” 

 

So far, more than $198,000 has been donated to Severance’s Operation Upright campaign. To support her efforts or for more information, visit fundraise.musc.edu/operationupright.

 

“I would like to thank and recognize my incredible MUSC medical team and all the wonderful people supporting and praying for me,” Severance added. “Daniel Island is an amazing community and I feel incredibly blessed to call it home.”