A Daughter’s Legacy

For Porter Raper and Jeanine Jackson, finding out about UVA Health’s Ehlers-Danlos and Hypermobility Disorders Center came at a painful time. Their 25-year-old daughter, Emma, after years of physical and mental health problems, and after receiving a new diagnosis of Ehlers-Danlos Syndrome (EDS) that came too late, decided to take her life. 

Emma Langdon Jackson Raper was a gifted musician and student and a loving friend and daughter, who often filled a room with laughter and energy. She was a 2023 graduate of Boston University, fluent in Spanish, and had been—until shortly before her death—living in Madrid, where she was a middle-school English teacher in the Spanish public school system. Beginning in childhood, she encountered a wide range of health challenges—multiple surgeries, immune-related problems, recurrent and rare infections, skin rashes, Eustachian tube and nasal problems, pelvic floor issues, as well as significant neck and back pain. She also struggled with debilitating ADHD, treatment-resistant depression, and OCD.  

For years, the problems were treated as separate issues.  

A possible link began to emerge only shortly before Emma’s death, with an unusual tendon rupture in her right thumb. She saw a hand surgeon who was surprised by the severity of the rupture. Her tendon had nearly torn away from the bone—a condition that wasn’t consistent with ordinary activities such as playing guitar or texting.  

“The surgeon told us he only saw this kind of trauma in sports injuries and car accidents and was confident something else was going on. That’s when he raised the possibility of a connective tissue disorder,” said Porter.  

Further evaluation eventually led to an EDS diagnosis. Emma was hypermobile, and the diagnosis offered a possible framework for understanding her seemingly unrelated symptoms, which now appeared potentially connected.  

EDS can affect many parts of the body, and patients may seek care from multiple specialists without realizing their symptoms could have a common underlying cause. The journey to a diagnosis can take years—sometimes decades. 

“Unfortunately, many patients have spent years moving from doctor to doctor without finding someone who truly understands what’s happening. That’s one of the reasons the UVA center is so important,” says Ina Stephens, MD, a pediatric infectious disease subspecialist, who specializes in EDS and integrative medicine.  

Emma and her family knew that fragmented journey firsthand. But Emma died before they could experience what a diagnosis might mean for her care.  

Then, amid their grief, Porter happened across a mention of EDS and UVA Health’s center in the alumni magazine of the Collegiate School in Richmond, which Jeanine had attended.  

That chance discovery led the family in an unexpected direction—from trying to understand what had happened to Emma to helping other families find answers sooner. They created the Emma Langdon Jackson Raper Memorial Fund to honor their daughter. 

“The goal is not simply to understand what happened to Emma. We founded her memorial fund primarily to help other families avoid the years of fragmented care and unanswered questions that Emma experienced,” said Porter. 

Even though the Raper Jackson family lives in Portland, Oregon, it has deep roots in Virginia. Both Jeanine and Porter are from Richmond, and Emma spent nearly all her Christmases and parts of her summers on the family farm in King and Queen County, about an hour from Richmond.  

As the family learned more about UVA’s center and the limited number of specialized EDS clinics available around the country, the idea of honoring Emma at an institution in Virginia began to take shape.  

After reading the alumni magazine, Porter and Jeanine connected with UVA clinicians and researchers, including Dacre Knight, MD, director of the EDS Center.  

Their conversations opened another avenue for the family’s questions: the possible relationship between connective tissue disorders and the brain. 

Because connective tissue is found throughout the body, EDS can be associated with a wide range of symptoms and conditions. Porter and Jeanine began wondering whether some of Emma’s mental health challenges might also have been connected to the biological processes underlying her other symptoms.  

“We learned that people with EDS can experience a range of immune-related and physical problems, and that mental health conditions have also been reported at higher rates in people with EDS. Those connections raised a profound question: Could there be a biological explanation linking Emma’s mental health challenges with the other problems her body had been experiencing?” asked Porter. 

Shortly before her death, Emma had seen an immunologist in Oregon who confirmed that her immune system was activated and that inflammation was present. Her family will never know whether that inflammation was connected to what was happening in her brain.  

But the possibility has become one more reason they want science pursued. 

“If research can clarify those connections,” said Porter, “Emma would be thrilled to know that her story might make a difference for someone else.” 

That hope inspired Porter and Jeanine to establish the fund at UVA. The fund will support research into the relationship between connective tissue and the brain, including the role of the extracellular matrix—a collagen-rich network that helps give tissues their structure. 

The family has also established an estate gift to support this work.  

“I am deeply moved by this gift,” said Dr. Knight. “And what moves me the most is that the family is transforming their grief into real hope for others. With this gift, Emma’s legacy will help us explore important biological connections between connective tissue and mental health that we are only beginning to understand. 

For Porter and Jeanine, the research questions surrounding inflammation and the extracellular matrix are particularly compelling, especially because traditional treatments did not mitigate or assuage Emma’s mental health challenges. He emphasizes that the possible connection remains a hypothesis, not an established explanation for Emma’s mental health conditions. 

But he believes the question is worth pursuing. 

“What if something critical is going on with that collagen connection?” Porter asked. 

“This is the primary goal of the fund,” Dr. Knight said. 

Still Making a Difference

Emma was more than her medical history.  

She had been imagining a future bringing together the things she loved most. She was interested in graduate school and had considered music therapy, in part because she loved working with children, but also because of her musical background as a classically trained violinist and an accomplished guitarist/vocalist.  

“She stood up for others, and she wasn’t afraid to take on institutions and people in positions of power. When she believed something was unjust, she acted,” said Porter. 

Emma once organized a petition over concerns about a chemistry professor at Boston University who, in her view, was not devoting enough time to the classroom. She rallied other students, advocated for changes to grading and classroom time, and taped the petition to the professor’s door.  

That spirit of determination is part of what her family hopes will endure. 

When Emma died in Oregon, her family donated her corneas to a national eye bank. Later, they learned that the transplant procedure took place at UVA Health, 3,000 miles away— another unexpected connection to the institution that would become part of Emma’s legacy. 

“Knowing that part of Emma is still physically alive in the Charlottesville area—and that her cornea restored sight to a Virginian—has been deeply meaningful to us,” Porter said. 

Emma’s family cannot change the years of unanswered questions she experienced. But they can help ensure that her story continues to open doors for others. 

Through the Emma Langdon Jackson Raper Memorial Fund, they are building something meaningful from the loss of their remarkable daughter: an opportunity for researchers to pursue questions that could deepen understanding of EDS and ultimately lead to better care. 

In that way, Emma’s search for answers continues—and may help another family find theirs sooner. 

To learn more about ways to support the UVA Health Ehlers-Danlos and Hypermobility Disorders Center, please contact Polly Hunter, senior director of development, at phunter@virginia.edu.