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On a rainy Monday morning last spring, Rebecca Taylor contemplated how to get to her organic chemistry lab at Texas A&M University with her trusty companions: her wheelchair and her nasal cannula with tubes attached to a bulky silver oxygen tank. “At least the oxygen tank has wheels!” Rebecca said with a laugh as she considered her predicament.
A friend volunteered to push her wheelchair while Rebecca held an umbrella overhead, dragging her oxygen tank beside her. “That morning we were quite a sight rolling through campus in the rain,” Rebecca remembers. When she arrived at the lab, she discovered that students were expected to sit at the elevated lab table on high swivel stools. “There’s a new challenge every day!” she said, good-naturedly, as she sought the professor’s help to accommodate her so she could participate in the day’s assignment.
Rebecca has learned that challenges like this are a part of living with a disability; however, these kinds of setbacks haven’t stopped her from reaching her goals. The 20-year-old is an undergraduate biomedical engineering major at Texas A&M. She is a National Merit Scholar, a Presidential Scholar, and a Brown Scholar and has already been accepted into Harvard as well as Texas A&M’s EnMed program.
Original diagnosis
Rebecca was 7 years old when she was rushed to Methodist Children’s Hospital in San Antonio with unbearable abdominal pain. Surgeons were preparing for an emergency appendectomy when a red flag warning flashed across the screen: PANCREATITIS. Pancreatitis is considered an adult disease, yet nearly 100,000 children are diagnosed with it annually.
Unable to accept food or fluids, Rebecca was taken by ambulance to Texas Children’s Hospital in Houston where doctors inserted a tube through her nose that bypassed the stomach and was placed into her intestines. She had to wear a backpack that pumped life-giving nutrition into her small body. She sat during recess and lunch watching other children play, eat, and drink while her disease forbade her to even take a sip of water. Never again would Rebecca’s body accept nutrition normally.
Since first grade, her journey has included over 100 surgeries, over 1,500 days in the hospital, and the loss of seven-and-a-half digestive organs. In one 22-hour operation in Minnesota, 12-year-old Rebecca lost her pancreas, spleen, the first part of her small intestines, gallbladder, and major bile ducts. She was the first person in the world to have her pancreatic stem cells implanted into not only her liver but her peritoneal cavity. Even after losing her pancreas, her transplanted stem cells produced insulin, and she was able to live without insulin for many years.
But Rebecca’s loss wasn’t over. Two years ago, surgeons also removed her colon, appendix, and another portion of her small intestines. “No one can believe I am surviving without these major organs,” she says.
Daily, Rebecca struggles to manage her disease and consume enough calories to live. Since October 2021, she has been fed through tubes in her heart because her body rejects any form of nourishment. When Rebecca has enough nutrition and strength, her oxygen tank stays propped in the corner of her engineering dorm room and her wheelchair is folded into the closet. Some days she needs only a cane, and on good days, she walks freely without aid.
Dealing with disabilities
According to the Americans with Disabilities Act, “A person with a disability is a person who has a physical or mental impairment that substantially limits one or more major life activities. This includes people who have a record of such an impairment, even if they do not currently have a disability.”
“When my oxygen levels are normal, I’m strong enough to walk and eat without aid, and I don’t look disabled,” Rebecca explains. “No one can imagine that I’m not perfectly healthy.” For example, she recalls, “I have a handicapped sticker, but a towing company towed my car when I was in a drugstore because I didn’t ‘look’ handicapped to them. When I picked up my car at the towing company, the woman behind the desk accused me of using my parent’s handicapped sticker and insisted I pay $400 to get my car back,” she says. She even offered to show the woman the feeding tubes going into her heart. “I explained that my meds were in the backseat and would melt if I did not get my car returned immediately,” she says. “That was one bad day.”
In another instance, Rebecca appeared on a viral video sitting in her wheelchair watching a dance performance on campus. Several students posted on the thread that the young woman in the wheelchair was moving her legs, and therefore she was taking advantage of the situation just to get a front row seat.
“I have learned much from my disease,” Rebecca explains. “Never judge anyone by how they look. No one can see my scars and tubes coming out of my body. No one can see my missing organs. Everyone, especially my age, wants to look perfect. But it’s OK not to be perfect,” she says. “Everyone has scars. Some you see, some you don’t.”
Rebecca’s Wish
When Rebecca was 12, the nonprofit Make-A-Wish, which usually grants trip requests or arranges meetings with celebrities, approached her and asked what she wanted. In a surprise request, Rebecca asked to meet with a medical philanthropist to start a foundation for children with pediatric pancreatitis. Make-A-Wish had never had this request.
As of 2018, Rebecca’s Wish is now a 501(c)(3) foundation. Its purpose is to research new treatments for pediatric pancreatitis while also training doctors and helping children and their families who are affected by this disease. Christyn Taylor, mother of Rebecca and President of Rebecca’s Wish, says, “In its first few years, Rebecca’s Wish has raised over $3 million, trained five pediatric endoscopists and helped countless patients and their families with hospital living costs.” Rebecca and Christyn have testified in Washington D.C. to the National Institute of Health and the FDA for the need to develop the first drug-targeted therapy in the world for pancreatic disease. In February, both Rebecca and Christyn were awarded the 2022 Robin Bush Award for their extraordinary work helping children through Rebecca’s Wish.
Camp Hope
Rebecca’s Wish partnered with the National Pancreas Foundation to start the first-ever Camp Hope for children suffering from pediatric pancreatitis. This was truly an inaugural experience, because never before had these children had a chance to go to summer camp. “To see the happiness in these children’s eyes, I felt like I was standing on holy ground,” explains Christyn.
Camp Hope was held in Ohio last July, and children traveled from 15 different states. “This disease is very isolating,” Christyn says. “This camp allowed these children to come together for the first time and realize that they are not alone in their suffering.”
A group of counselors at Camp Hope that mentored these young people had themselves been victims of pediatric pancreatitis, including Rebecca. Numerous doctors and nurses were on staff, including renowned endocrinologist Dr. Melena Bellin from Minnesota and Dr. Sandeep Patel, from University of Texas Southwestern, who pioneered pediatric endoscopy and is now training the new doctors through Rebecca’s Wish. “Rebecca’s Wish is truly changing the face of pediatric pancreatitis worldwide,” explains Christyn.
Rebecca Taylor remains steadfast that her life is beautiful. “Quite the opposite of what you probably think my sentiments are, I would never trade my life with anybody else’s in the world. Pain and suffering do not equate to a constantly hostile and forbidding world. It’s within that darkness that you can find the beauty,” she says. “I want to believe that my suffering can help another child. I realize that I am disabled. But I also know that I am able. I am able to make a difference.”
For more information on pediatric pancreatitis, visit rebeccaswish.org.
Update: Rebecca has been unable to attend Texas A&M fall classes 2022. She remains in ICU at University Hospital in San Antonio after undergoing numerous surgeries and procedures since August 1.
About the Author
Rebecca Crawford Russell is a freelance writer and a community volunteer. She is the mother of four and the grandmother of 13. Rebecca Taylor is her eldest grandchild.
