Make-A-Wish Recipient Opts to Help Other Kids with Pancreatitis Instead of Meeting Her Idol Taylor Swift

Rebecca Taylor and her mom Christyn started Rebecca's Wish to support pediatric pancreatitis patients and their families

As any “Swiftie” will attest, meeting Taylor Swift in person would be a once-in-a-lifetime dream to end all dreams.

But when the Make-A-Wish Foundation asked then-12-year-old pancreatitis patient Rebecca Taylor if she wanted to meet the pop superstar, she politely said no to the rare opportunity to hang out with her.

Though she would have loved spending time with one of her favorite singers, she tells PEOPLE in this week's issue, “I wanted to start a pancreas center for other children so they don’t suffer like I did.”

This was likely not the answer Make-A-Wish was expecting, but it came as no surprise to anyone who knows Rebecca. Since she was 7, Rebecca has battled autoimmune autonomic ganglionopathy, a rare neurological disorder that attacked her organs, including her pancreas.

To take her mind off the excruciating pain from the pancreatitis she developed, she started making cards and crafts for other kids whenever she was in the hospital. “I was able to get outside of myself and focus on something greater than myself,” she says. “And that, ironically, helped my own pain.”

This is the essence of who Rebecca is. Now 20 and a sophomore at Texas A&M University in College Station, Texas, Rebecca has survived more than 150 surgeries for life-threatening complications of her disease. She has spent more than 1,300 days in the hospital in the last 13 years, causing her to miss school and college classes for months at a time. She struggles to get out of bed each morning. At times she has to rely on a wheelchair and oxygen tank. (As of press time, she is in the hospital after undergoing emergency surgery because of complications of the disease.)

But since 2018, she and her mother, Christyn Taylor, have helped dozens of young pancreatitis patients with their charity, Rebecca’s Wish. The mother-daughter duo launched the non-profit — the nation’s first pediatric pancreatitis organization — after Make-A-Wish granted Rebecca’s wish by helping with a gala to kickstart it.

To date, Rebecca’s Wish has raised more than $3 million and provides supportive care to patients and their families, funds cutting-edge medical research, hosts a summer camp, Camp Hope, for patients, and trains doctors to treat pancreatitis in children.

For more on Rebecca Taylor, pick up the latest issue of PEOPLE, on newsstands Friday, or subscribe here.

Chronic pediatric pancreatitis impacts 2 in 100,000 American children each year, according to the National Institutes ofHealth, and because the symptoms of severe abdominal pain and vomiting can be linked to other ailments, “doctors don’t know to look for it in children,” Rebecca says. While cases are still rare, they have been rising in the last two decades. “We retrain doctors,” she says, “to let them know that it does affect children.”

On Oct. 26, Rebecca and Christyn will be honored by Points of Light, the organization founded by former President George H.W. Bush, at its fifth annual awards celebration in D.C.

Other honorees include former Secretary of State Condoleezza Rice; Beach Boys co-founder Mike Love and his wife and business partner, Jacquelyne Love; and Robert F. Smith, founder of Vista Equity Partners and a leading African-American philanthropist.

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A Courageous Journey

Rebecca and Christyn want to help other kids because they know how tough it is for a child to get an accurate diagnosis and the right treatment.

In 2010, Chrystyn and her husband Brian rushed their daughter to the hospital, “screaming in pain,” says Christyn.

After being misdiagnosed with appendicitis, one doctor realized she actually had pancreatitis. As her condition worsened, they went from hospital to hospital, seeking help for Rebecca, who was on feeding tubes because she couldn't eat. “All the pediatric doctors came and said, 'We don't know what to do’ and essentially sent her home to die,” says Christyn.

Finally, they met Dr. Sandeep Patel, a pancreatic specialist for adults at UT Health San Antonio, who said he could help. Despite more than 20 procedures he performed on his young patient, her pancreas failed in 2014.

She had no choice but to undergo an experimental transplant at the University of Minnesota Hospital in Minneapolis, Minn., the only facility that would perform the risky surgery on a child. “We were going to lose her if we didn't have it,” says Christyn. Surgeons removed seven diseased organs, including Rebecca's gallbladder, pancreas and spleen and injected her liver — now acting as a super organ — with islet cells from her pancreas.

They thought the worst was behind them. But in 2019, Rebecca learned her colon was failing. “They didn't think she was going to live through that with her compromised system,” says Christyn.

Rebecca spent eight long months in the hospital. But that didn’t mean that she had to miss out on family celebrations. Christyn made sure the whole family, including Rebecca’s brothers, Nicholas and Alexander, celebrated birthdays and holidays at the hospital when Rebecca was there.

“They were practically raised in hospitals,” says Christyn. “The nurses were like family to them. My boys loved taking care of the children who didn't have family members there. And it became a home to them.”

Nowadays, Rebecca is as motivated as ever to keep living life on her terms. “I don’t want my whole life to be dictated by disease. I don't want to let that disease become the only thing that defines me,” she says. “That for me is going to school.”

Rebecca is majoring in biomedical engineering with plans to become a researcher one day. “Iwant to be the doctor in a lab trying to come up with cures,” she says. “Whatever I can do to ease that pain on the little kiddos.”

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After graduating from Texas A&M, she plans to earn a master’s degree in biochemistry at Harvard University, return to Texas A&M for a master’s degree in engineering and then earn a doctorate at the School of Engineering Medicine in Houston.

In between studying, Rebecca hangs out with her boyfriend and her friends. “I am a big extrovert,” she says. “I can't really get out and party or anything like that. But every Sunday night I have Hallmark movie nights where a bunch of my girlfriends come over and hang out. They’re perfectly fine and happy to just hang out with me here.”

She enjoys spending time with her mother, who is “a force,” she says. “She's the only reason that I'm alive today.” She admires her mother for devoting so much of her life to helping other kids. “She’s taking care of thousands of other children so they can move on and change their lives — and being that mom for all of them.”

In the years since Rebecca’s Wish began, Christyn, the charity’s president, has become a de facto expert on pediatric pancreatitis and is often asked to speak about the disease at hospitals and medical schools. She is also on the Executive Board of Directors for the National Pancreas Foundation.

Her mother is proud of everything Rebecca has accomplished. “She is an absolute miracle,” she says.

As for Rebecca, she has no regrets about passing up the chance to meet one of the biggest stars in the world.

"If I met Taylor Swift, it would be for one day or an hour," she says. "That’s it. But with the pancreas center, I'll work on this until the day I die. It will always be with me."

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