SAN ANTONIO – Rebecca Taylor, 21, sat in her living room and lit up as she talked about science.
She’s a Texas A&M junior studying engineering and eventually medicine to one day cure pancreatitis.
“[It’s] one of the most painful diseases in, if not in the entire world,” she said.
The disease has tried to claim her life many times since she was seven years old.
She has spent more than 1,500 days of her life hospitalized and had 150 surgeries, including a pancreas transplant.
“I have a neurological disease that attacks different organs, and it focuses on one at a time,” Rebecca explained. “So it started with my pancreas, and we removed that when I was 12 years old. And then it started on my colon and it just, it moves on.”
There were pediatric doctors, support groups and research for every other organ except for the pancreas.
Pediatric pancreatitis was long thought to be extremely rare and only impacted adults; it’s now estimated there are 3 to 13 cases of pediatric pancreatitis in every 100,000 children, or about 10,000 new cases a year.
However, the disease is often misdiagnosed and misunderstood because doctors don’t know how to look for it in children and often confuse it with other conditions.
Rebecca called herself lucky even to be diagnosed so quickly, calling that rare.
“Very often, the majority of our children, by the time we reach them, they’ve had their gallbladder removed for no reason or their appendix,” Rebecca said.
However, a diagnosis is just the beginning. After her diagnosis, she had to travel to three cities, spending months in the hospital to find a doctor.
“The only doctor who was willing to take me was an adult doctor who operated on children because there was nowhere else to go,” she said.
Her family then realized kids all over the country were getting handed late and devastating diagnoses with no one to help them.
That’s why she and her mom, Christyn Taylor, founded Rebecca’s Wish in 2017.
“We trained the first pediatric doctor who was able to help us,” Rebecca said. “We’ve planted them all around the United States, and we’re working on a couple more so that children don’t have to travel to San Antonio to get treatment.”
Christyn said Rebecca’s Wish covers every angle of care.
“Helping financially so that they’re not under so much water, but also their education, mental health, forming other connections, learning how to make bonds with friends that are like them,” Christyn said.
Rebecca’s Wish has accomplished specific goals that have altered the lives of not just families but doctors, too. The organization:
- Provides travel vouchers for families whose children spend long periods of time in the hospital because of pancreatitis
- Supports and helps fund the nation’s first fellowships to train doctors in procedures for pediatric pancreas patients.
- Spearheaded the nation’s first Center of Excellence list of hospitals serving this group of children.
- Launched a Passport Program to increase awareness of pediatric pancreatitis symptoms and treatment among doctors and nurses when a child needs help at a local hospital.
Rebecca added, “We started Camp Hope, which is the first camp for them, where they can just have a moment to not focus on medical, to just be a kid while also having pretty much a fully functioning E.R. next door so that they can have the proper medical care while also having time to just go swimming with friends.”
The work was so astounding it landed them George H.W. Bush’s prestigious Points of Light Award.
“This is a $25,000 grant. We have a huge ceremony. There’s only four people that get this,” Christyn said.
Last month, they attended the star-studded ceremony in Washington, D.C., at the Ronald Reagan Building and International Trade Center.
Other recipients included Mike and Jacquelyn Love, Condoleezza Rice and Robert F. Smith. Former Presidents Bill Clinton, George W. Bush and Barack Obama once again served as honorary co-chairs.
“One of the winners, of course, Secretary of State Condoleezza Rice, who has been a hero of mine for a very long time. All of these wonderful people, and we kind of laughed going, ‘We’re the non-famous people of the group,’” Christyn said.
But it wasn’t just standing next to their heroes. It was allowing those people to see and now support their mission, which they say has already happened.
“These dignitaries and wonderful philanthropic-minded groups of men and women came to us in droves afterward and just said, ‘What a wonderful thing you’re doing. How can we stand by and support?’” Christyn said.
That’s the main takeaway for Rebecca.
“You have a ton of children who are all just floundering because they don’t have a place to go. So to have that attention brought on it, that’s pretty amazing,” Rebecca said.
It’s a true reflection of her strength.
A continuous patient herself, she is still weaving her energy and studies in and out of hospital stays, with one goal -- to save others.