Texas College Student with Pancreatitis Starts Nonprofit with Her Mom to Help Children with Same Debilitating Disease
Meet Daily Point of Light Award honorees Rebecca and Christyn Taylor. Read their story and nominate an outstanding volunteer or family as a Daily Point of Light.
Rebecca Taylor was only seven years old when her happy childhood in San Antonio, Texas, came to a terrifying halt. On Memorial Day weekend of 2010, she was hospitalized and diagnosed with pancreatitis – a disease uncommon in children – caused by an even rarer autoimmune disorder that attacks her organs. Over the years, Rebecca underwent numerous procedures and surgeries to battle the incurable disease, including a transplant that removed her pancreas, gall bladder, spleen, duodenum and bile ducts.
Due to her condition, Rebecca’s childhood and teenage years were impacted as she missed out on family holidays, her entire senior year of high school and other typical life events, such as summer camp.
“I went to camp maybe a couple of times and most of the time, I had to leave early, once in an ambulance,” Rebecca, now 20, recalled.
As hospitalization after hospitalization eventually turned into more than 1,500 days in the hospital, Rebecca and her mother, Christyn, became experts in not only pediatric pancreatitis but the hospital system as well.
“It was months and months of trying to find out what was happening,” Christyn said. “But then it moved to an acceptance of, ‘Well, we’re here. So what can we do about this to make Rebecca’s life better while she has to live in the hospital?’ And even though the pain medicine and treatments were good, that’s not what made her happiest. What made her happiest and come alive was knowing that she could help somebody else in this situation.”
At age 12, when Rebecca was approached by the Make-A-Wish Foundation to grant her any wish she wanted, it was to no one’s surprise that Rebecca asked for help staring a nonprofit that could help other children with pancreatitis. From there, Rebecca’s Wish was born.
Make-A-Wish helped Rebecca’s Wish get started by organizing its first gala, which raised more than $500,000. Since then, Rebecca’s Wish has exponentially grown, fundraising through galas and other events such as Wild for Wishes, where patients and donors meet each other while enjoying a day at the San Antonio Zoo.
“Eighty thousand children potentially can get a pancreatitis attack in a year, but when it gets to an extreme state, children had no choice but to live their lives in terrible pain because there was nobody to treat them and very little information about the disease,” said Christyn, who leads Rebecca’s Wish as president of the organization. “To this day, we raised over $3 million and have helped children, not just in the San Antonio area, but across the nation.”
With these funds, Rebecca’s Wish has been able to spread awareness about pediatric pancreatitis and provide support to patients in various ways, such as helping families with medical bills and connecting them to specialty doctors.
“When I was seven years old, there was no pediatric pancreatic doctor, only adult doctors who were willing to take on children in emergencies. So, we trained the first pediatric pancreatic doctor,” Rebecca said. “A child in New York shouldn’t have to fly all the way down to San Antonio every time they need treatment, so we are slowly but steadily planting them all over. So far, we have doctors in Utah, California and Louisiana.”
The money raised by Rebecca’s Wish also goes toward funding crucial research on pediatric pancreatitis. This year, Rebecca and Christyn plan to attend several medical conferences across the United States to present the latest research they have worked on with a team of doctors. Rebecca’s Wish is also funding production of the first pediatric pancreatic stent as there is currently only adult-sized equipment for the procedure, according to Rebecca.
One of Rebecca’s favorite programs is Camp Hope, a summer camp where children with pancreatitis can enjoy activities such as swimming, archery, horse-back riding and crafts, all while being in a safe environment.
“We have doctors up there so the children can get the care they need if anything happens,” Rebecca said. “They’re able to do fun things and be a kid, which is something that’s just taken away from so many of these children so early on.”
Hannah Martinez, 16, is one of the many pediatric pancreatitis patients Rebecca’s Wish has helped. In October 2018, she had her first pancreatitis attack, and the pain was so severe that between bouts of vomiting and moans of agony, she was begging to be put to sleep, according to her mother Jeanette Robinson.
“Before meeting Dr. Patel through the work of Rebecca’s Wish, we were plagued with ‘I don’t knows’ and diagnostic uncertainties,” Jeanette said. “Thankfully, with Rebecca’s Wish intervention we at least now have answers. And these answers, while they are terribly hard ones to hear, allow Hannah understanding and the ability to create plans and strategies for her life.”
“I could not be more grateful or indebted to the work of Rebecca’s Wish in literally saving us from darkness, giving us a community for comfort and sharing, and more than anything, relentlessly pursuing better treatments, better education, better access to specialized doctors and ultimately, hope for a better life ahead, with a cure,” Jeanette added.
Rebecca, now a sophomore at Texas A&M University, is studying to become a medical researcher as Christyn runs the day-to-day operations of Rebecca’s Wish. Hospitalizations for Rebecca are still frequent, the pain is constant and she often needs a wheelchair to get around, but she said that won’t stop her from continuing Rebecca’s Wish.
“I’ll be in that lab one day and working there as much as I can to find a cure for these kids. I can do research from a hospital if I need to,” Rebecca said. “But as long as there’s a child with pancreatitis, Rebecca’s Wish will be around.”
“Although [Rebecca’s illness] is not what we wanted, our purpose now is a lot bigger and filled with more beauty than it could have ever been had this not happened,” Christyn said.
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