For her 18th birthday in March, Grace Trumpower gave herself what she and her family hopes is a life-changing gift.
Grace and her mother, Juliann, traveled to Cancun, Mexico, so Grace could undergo three stem cell treatments over nine days, using stem cells pulled from her own fat tissue. She has been battling juvenile arthritis and several other serious conditions. The Indian Land High School student received the treatment in Mexico because the procedure is still pending approval here by the Federal Drug Administration.
Later this month, Grace will go Houston to see Dr. Ian Butler, a pediatric neurologist who’s been treating her since late last year, and Dr. Stanley Jones. They’ll evaluate her condition since the first stem cell treatment, and hopefully prescribe future treatments, said Grace’s dad, Erik.
Grace has also been accepted into a trial by Celltex Therapeutics Corp., a Houston-based biotechnology company where her stem cells are banked for future treatments. After the Celltex trial, it’s the Trumpowers’ hope that it could lead to a clinical trial by the FDA.
A science enthusiast herself, Grace said she is looking forward to being a guinea pig in medical research that could eventually be approved by the FDA and help others in the United States.
“It’s great news,” she said. “I’m so excited.”
Hope for multiple conditions
Doctors say the stem cell treatments could help with Grace’s juvenile arthritis and what Dr. Butler has diagnosed as dysautonomia, a condition that affects the autonomic nervous system, which controls the body’s involuntary functions. Grace also has cerebral palsy and gastroparesis, a stomach condition that affects how food moves through the digestive tract.
The Trumpowers hope the stem cell treatments can help with all of Grace’s medical conditions.
In the same treatments in other patients, the stem cells “find” inflammatory, problem cells and regenerate them into healthy ones, they said. The treatment procedure itself was fairly simple, with Grace receiving her stem cells through an IV over a two-hour period each time.
Each treatment left her exhausted and feverish. After consulting with 50 doctors for relief from pain, difficulty eating, photo sensitivity, tightness in her chest, a high resting heart rate and other complications, and even being told that her medical conditions were “all in her head,” Grace didn’t want to get her hopes up about the stem cell procedure.
“I wasn’t thinking that it was going to do anything at all,” she said. “I thought maybe I’d get to go to the beach (in Cancun). But then I woke up and was hungry. I had pizza and I was so happy.”
After the first treatment, her appetite returned. She woke from a long nap and ate pasta, pizza and a variety of Mexican pastries.
“And then breakfast came, and she ate again,” said Juliann, with a smile.
Before the treatment, Grace had lost 25 pounds in two months and was barely been able to stomach the rice and nutritional formula she received through a tube.
“She was withering away,” Erik said. “She still really can’t drink that much, but no more formula. That part has been amazing.”
Grace also suffered from numbness in her legs, which looked blue before the treatment because blood wasn’t flowing properly to them. The color has returned to her legs and “I can feel my feet again,” she said.
Butler specializes in rare conditions. Grace, who has the aura of someone mature beyond her years, documents her symptoms in a detailed journal. While other doctors did little more than glance at Grace’s writings, Butler read the journal and was able to explain the “why” behind her symptoms.
“Dr. Butler said my notebook was very meticulous,” said Grace, who reads her mother’s nursing textbooks. It had been frustrating going to so many doctors and receiving so many different diagnoses, and Grace did a lot of study herself to try to figure out what was going on with her body.
“If I wanted it done right, I had to do it myself,” she said, with her characteristic determination.
Because the stem cell treatment is so new, it’s hard to tell how many Grace will need.
“They (doctors) need FDA approval,” Juliann said. “They need kids like Grace to show that it’s working.”
The community rallys
Because of her medical conditions, it’s been difficult for Grace, who was once at the top of her class at ILHS and participated in marching band, to attend school. She’s tried to do online courses, but those require her to start her day early, when often she is more alert and in less pain in the afternoons.
“It’s pretty hard to focus when you’re in pain,” Grace said, although the Trumpowers have nothing but praise for how accommodating the school district has been. She’s six classes short of her high school diploma and is considering getting a GED so she can start taking college courses. Her interests include linguistics and neurology and she’s been learning Greek. She’s thought about becoming a doctor or a social worker, to advocate for the disabled.
Although she wasn’t feeling well and almost didn’t go, Grace attended Joy Prom at Carmel Baptist Church in Charlotte on April 28. The event is for special needs children and Grace has attended in the past. It gave her the chance to see many friends she’s known since preschool.
“I see my friends a lot, but I don’t get to see them all together a lot,” she said.
Support from the community and from friends and family has been amazing, Erik and Juliann say. The $30,000 raised by the family’s gofundme account paid for travel and costs of Grace’s first treatment.
Grace says her friends have been so supportive even though she hasn’t been able to attend school. Many posted her gofundme account on their social media pages.
“They said really nice things about me,” Grace said.