DI teen raises $1.2M for MUSC to install upright MRI

A Daniel Island teen’s fundraising effort to bring an upright MRI machine to the Medical University of South Carolina is now a sure thing. 

 

In 2021, Sydney Severance launched the “Operation Upright” campaign with a lofty goal of raising the $1.2 million needed to purchase the machine for MUSC.

 

The family announced on April 30 the goal has been reached with the help of the community and a generous donation from an anonymous matching donor. 

 

In 2020, Severance went from being an active Bishop England High School student and a competitive tennis player to wheelchair bound. After months of debilitating pain and no answers, Severance was ultimately diagnosed with hypermobile Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder. She also developed a common complication of EDS called craniocervical instability (CCI) that caused the ligaments in her neck holding her skull in place to loosen causing trauma to her brainstem.

 

The diagnosis was made possible because Dr. Sunil Patel, chief of neurosurgery at MUSC, recommended that she get an upright MRI as traditional MRI studies are unable to detect CCI. The Severance family, desperate for answers, took on the added stress and trauma of traveling to have the scan performed since an upright MRI was not available in the Lowcountry. It often takes years, even decades, before patients receive a diagnosis of EDS/CCI. 

 

Severance launched Operation Upright because she wanted to eliminate the cost, stress and pain of travel for other patients in South Carolina and to reduce the time it takes for patients to receive a diagnosis.

 

 “I’m in awe,” Severance said after hitting the fundraising goal. “This means there is real hope for so many. I’d like to thank the thousands of donors that made this possible.” 

 

In the coming months, MUSC will use the $1.2 million raised to purchase and install the machine. 

 

MUSC Health CEO Dr. Patrick J. Cawley previously told The Daniel Island News the machine can scan patients in any position, allowing it to detect problems that can’t be seen when a patient is lying down. 

 

Severance’s fundraising achievement is a big step in the right direction for EDS/CCI patients and those with complicated spinal issues. It gives doctors a vital tool needed to make an accurate and timely diagnosis. 

 

 “Whether one dollar or thousands, each donation made a meaningful difference. Thank you for your generosity and support of our daughter’s biggest goals,” her parents Matt and Ashley Severance said.  “Starting a fundraiser with such an ambitious goal was daunting, but it held promise and a path forward for so many, including Sydney.” 

 

Severance’s battle with EDS remains steady as she experiences good days and not so good days. Nevertheless, her fighting spirit shines brightly.

 

“Both her family and team of doctors are so proud,” Severance’s parents said. “She inspires all of us.”

 

What’s next for Severance? She plans to attend the College of Charleston in the fall to pursue a degree in medicine while staying involved with The Norris Lab, which focuses on finding genetic causes of EDS. 

 

To view Severance’s continued journey, follow her on Instagram @operationupright.