Wilsonville teen advocates for organ donation in shoe design
Published 1:03 pm Monday, November 4, 2024
- Jillian Beagley, a 15-year-old living in Wilsonville, designed a shoe through the Doernbecher Freestyle program that sold for $51,000 in an auction raising money for the hospital. (Courtesy Photo: Oregon Health & Science University)
Jillian Beagley, a 15-year old student-athlete living in Wilsonville, knew from a young age that she would need a liver transplant. Now, a shoe she designed through the Doernbecher Freestyle program serves as a reminder of how an organ transplant changed her life — and so many others.
Jillian was born with biliary atresia, a condition involving a blockage in tubes that carry bile from the liver to the gallbladder. Her mom, Jennifer, said the disease destroyed her gallbladder and damaged her liver, and while Jillian received a “Band-Aid” procedure for the condition at three months old, her family was told she would need a liver transplant later in childhood.
The time for a transplant came while Jillian was in fifth grade, after doctors found tumors on her liver. Her family learned the tumors were benign, two weeks after a Christmas Eve biopsy, but a few months later the family decided to put Jillian on the waiting list for a liver transplant. Simply cutting off the part of her liver with the tumors would increase the risk of cancerous tumors developing when her liver grew back, she said, leading to the decision for a transplant.
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Jillian only spent a few weeks on the waiting list, with the urgency of her situation giving her higher priority, and traveled to Stanford University for the procedure in the following spring. After the surgery, Jennifer learned that Jillian was “fortunate” to have the surgery when she did.
“Her liver was way worse than (the symptoms) she was presenting, and that we anticipated being,” Jennifer said. If she had not received the surgery, Jillian’s condition would have been life-threatening, Jennifer said later in the interview.
Now a freshman at Tualatin High School, Jillian was able to advocate for organ donation through her shoe design — which recently sold for $51,000 at an auction raising money for Doernbecher Children’s Hospital.
“I think it’s very important for people to be able to give their organs when they pass away, because (my organ donor) gave me a second chance, and that was a big thing,” Jillian said.
Jillian was a “patient-designer” for the Doernbecher Freestyle program, which is a partnership between Nike and Oregon Health & Science University Doernbecher Children’s Hospital. Patients are selected to design a shoe which is then sold at an auction raising money for the hospital. This year, which is the 20th anniversary of the program, OHSU senior media relations specialist Nicole Rideout said in an email that $1.5 million dollars was raised for the hospital, and one participant broke a record with a shoe selling for $77,500.
Jillian’s design was made through a collaboration with Nike designers, and is inspired by her hobbies and values. The shoes are mismatched pink and blue because of her tendency to wear mismatched shoes while playing basketball. The design includes interchangeable patches that reflect her hobbies, like the character Bluey, a clover representing the Boston Celtics and a “golden jump man” to represent being a state champion for basketball.
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“I just love sports. I’m very competitive,” Jillian said. She plays basketball, soccer and lacrosse, and also enjoys coaching young children.
Phrases significant to Jillian are written on the shoe, like “sports are my joy” in her own handwriting, and “give life” to acknowledge her organ donor.
While Jillian is no stranger to hospital procedures, having been in the hospital for numerous blood draws as well as ultrasounds, endoscopies and a bone marrow biopsy, she said the transplant “was definitely a huge, different thing” for her. Being able to spread awareness was impactful for her.
“I kind of knew what an organ donor was, but I think you don’t fully understand what it does and how it impacts people until you’ve been given something,” Jillian said, adding that she believes that, generally, this lack of awareness shows a lack of education on the topic.
Jennifer added that while Jillian was told about her need for an organ transplant at an age-appropriate level throughout her childhood, the knowledge of the meaning behind a transplant is still “heavy.”
“I think it’s a heavy thing to carry, that someone died, and that saves you,” Jennifer said.
Jillian said she hasn’t had any issues since the transplant, with Jennifer noting that Jillian’s body has “responded exceptionally well, considering everything.” She is looking towards basketball tryouts, though she is currently waiting for a broken arm to heal.