Indian Land High School junior Grace Trumpower spent Christmas far from home, in a hospital bed in Texas.
“I was upset about having Christmas in the hospital, and I was especially worried that my siblings would not like Christmas in the hospital,” Grace wrote in an update for the gofundme.com account set up to help with her medical expenses.
“My mom was right, and it turned out to be one our best Christmases ever!”
Grace’s mom, Juliann, decorated her daughter’s room for Christmas, setting up a white tabletop tree decked with red and green balls. The day included visits from Houston Texans defensive end J.J. Watt and Houston Rockets forward Sam Dekker.
“I think it is heartwarming that J.J. Watt and Sam Dekker, two people who have enough money to do whatever they wanted on Christmas, chose to visit a Children’s Hospital,” Grace wrote in another update. “Shout out to J.J. Watt again for fulfilling my brother’s (Jakob’s) dream, and for giving me leverage, which I can now use to get Jake to take me places. (Kidding, sort of).”
Dekker asked Grace about school and both Grace and her mother were impressed with his down-to-earth attitude.
“He thanked me for letting him see me,” Grace said in a phone interview last week. “He was a really sweet guy, very humble and very sweet.”
Once expected to graduate at the top of her class at Indian Land High, Grace, 17, has attended school on a reduced schedule for the past two years.
She’s been struggling with juvenile arthritis, which, said her dad, Erik, can cause severe chronic pain, persistent fevers, nausea, dizziness and headache. He and his wife, Juliann, who worked as a pediatric nurse at Carolinas Medical Center before taking time off to care for Grace, have taken their daughter to 50 doctors in search of relief.
Looking for answers
Without answers, the Trumpowers traveled to Houston in December, where Grace is under the care of Dr. Ian Butler, a pediatric neurologist who specializes in rare conditions. It is now the family’s hope that Grace can receive an infusion of her own stem cells, a treatment only available in Mexico right now.
During the treatment, Grace’s stem cells will be pulled from her fat tissue, then cultivated for six weeks. She will then receive infusions of her own cells over eight days, with the stem cells “finding” the inflammatory, problem cells and regenerating them into healthy ones, Erik explained. Her stem cells will be banked with Celltex Therapeutics Corporation, a Houston-based biotechnology company, for any future treatments.
“There’s no guarantee to it, but it’s worth giving it a shot,” Erik said.
Doctors say the stem cell treatment could help with the juvenile arthritis and what Butler believes is dysautonomia, a condition that affects the autonomic nervous system, which controls the body’s involuntary functions. Butler believes the condition has affected Grace’s ability to drink or eat and digest food properly, which has led to her weakened state.
The treatment could also help with the condition Grace was born with – cerebral palsy. Erik said it has never held Grace back in any way, and she was ranked No. 1 in her class, participated in marching band and worked out with a trainer before she had to cut back on her class schedule.
Grace has had to delay graduation, but has “thousands of dollars in scholarships available to her” if she can get healthy enough to return to the classroom, Erik said.
“We just want our daughter back the way she was – not in pain,” he said. “She’s an incredible little girl – she’s just my hero.”
Need to raise money
The Trumpowers have good insurance, they said, but the stem cell treatment is not approved by the U.S. Food and Drug Administration so they must go to Mexico for it. They expect expenses to reach $50,000. The family was reluctant to set up the gofundme.com account, but did so after so many family members and friends said they wanted to donate.
At press time, the fund totaled $12,935 – raised in 12 days.
“It’s taught us a lot about how giving people are,” Erik said. “We’re staying at the Ronald McDonald House” – Grace’s brother, Jakob, 19, and sister Malia, 13, both came to Houston for Christmas – “and it’s a good learning experience for the kids.”
Grace said her high school friends who can’t donate money have been sharing the account on social media.
“People have just been writing the nicest things about me,” she said. “It’s nice to know my friends still support me even though I’m not in school.”
Grace is well loved at ILHS, said school registrar Karen Paulson, who shared the gofundme account on her own Facebook page with the comment, “One of the best human beings I know.”
“When Grace came to (Indian Land High) as a ninth-grader, she impressed us immediately with her ‘can-do’ attitude and strong work ethic,” Paulson said. “She’s been involved in marching band and this fall started EQUIP, a club for young people with disabilities.”
Paulson said she considers Grace an inspiration and “a gift” to ILHS, and is impressed with the teenager’s dedication to her school work.
“It’s been tough watching her suffer these past several months, but also inspirational to see how she handles it all,” Paulson said.
“That girl takes care of business. She’ll call us from her hospital bed about her class schedule, or to ask about exams. It’s not Dad or Mom doing that. She calls us herself. She is universally loved and admired by students and staff at Indian Land High. She’s a born leader and a gracious young woman.”
The Trumpowers are full of hope for Grace, who has seen some improvement since her arrival in Houston. She was placed on motility medications, which help move food through her digestive system and she was able to eat a real meal for the first time in months. She made a list of the foods she ate in a gofundme update: Jell-O, a tuna sandwich, macaroni and cheese, mashed potatoes and a chocolate cupcake.
“I have had a couple of pain spikes in the last couple nights, but I think they are exercise-related, and, therefore, good,” Grace wrote in an update on Dec. 29. “I am optimistic about starting rehab at Shriners Children’s Hospital soon.
“I have been painting a lot today. It helps with my anxiety and depression, while simultaneously distracting me from my pain,” she continued. “If any of you all are struggling with something, I encourage you to try art therapy and music therapy. Those have helped me a lot.”
She ended the post with a thank you.
“Thanks to everyone who has donated and/or sent us care packages. It helps a lot to know that people are thinking of me.”
To make a donation or follow Grace’s progress, visit gofundme.com/for-graces-stem-cell-therapy.