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.