A Wish Fulfilled

Finding Purpose Through Pain

Rebecca knows the constant pain and challenges caused by pancreatitis, a debilitating and chronic disease that afflicts approximately 60,000 children annually. Since age 7, the San Antonio native has spent more than 1,500 days in the hospital and survived more than 150 surgeries for pancreatitis and autoimmune autonomic ganglionopathy, an extremely rare disorder that attacks the nerves in her organs.

When Rebecca was first hospitalized and diagnosed with pancreatitis in 2010, “there was a big hole of knowledge in the medical world about this disease,” Christyn said. “Every doctor told us something different. There was not a single research paper. There was nothing to even Google.”

So, the Taylors had to advocate for themselves. They learned through lived experience what the best pain management protocols were. After a year of searching, they found a specialist in adult pancreatitis willing to see Rebecca. When her pancreas failed in 2014, she had an emergency life-saving operation that removed five of her abdominal organs, including her pancreas, and an experimental transplant of insulin-producing cells from the pancreas into her liver to manage her blood sugar.

Along their journey, the Taylors met other families facing the same struggles and frustrations and became a comforting and critical resource for helping them navigate the medical system. Rebecca found that the best remedy for her own unrelenting pain was helping other children. “When facing a disease you can’t recover from, it’s easy to get wrapped up in the pain if you don’t find something else to focus on,” she said. “For me, it’s all about these kids.”

Advancing Care, Services and Research

Since its launch, Rebecca’s Wish has raised more than $3 million for its three focus areas: supportive patient care, charitable services and medical research. The organization pays transportation costs for patients and families and empowers them to advocate for the critical care they need. It has funded the first fellowship program of pediatric endoscopists trained specifically to treat children with pancreatitis. At CHRISTUS Children’s in San Antonio, it pays for a mental health counselor for pancreatitis patients with hopes to expand that pilot to other children’s hospitals nationwide.
 

Rebecca’s Wish has also partnered with the National Pancreas Foundation to hold Camp Hope, a first-of-its-kind summer camp where pancreatitis patients can meet understanding peers and experience childhood joys they would otherwise miss out on while still having the on-site medical care they require. This July, 65 pancreatitis patients from 20 states gathered in San Antonio for a fun-filled week of sports, crafts and camaraderie. “Camp Hope lets them just be a kid,” Rebecca said. “It’s beautiful.”

“Do Something That Makes a Difference”

Pictures of smiling Camp Hope kids and other Rebecca’s Wish friends plaster Rebecca’s bedroom wall in her College Station apartment. They always cheer her up, especially on Fridays, when she has a six- to 12-hour infusion that helps keep her immune system in check.

For Rebecca, just being on Texas A&M University’s campus is a major accomplishment. Because of the disease’s overwhelming difficulties, she is one of the first pediatric pancreatitis transplant patients to attend a four-year institution for college. She finds no greater thrill than just being in class, even if she needs to use a wheelchair or oxygen tank to get through the day. “To not be lying in a hospital room, but to be able to think, learn, be productive and feel like you can do something that makes a difference is my favorite part of being at Texas A&M,” she said.