When Sophia Gulley was three years old, she was diagnosed with Neuro Fibromatosis, a genetic mutation that leads to the growth of different types of tumors in various parts of the body. In Sophia’s case, she developed a pontine glioma, a tumor on the brain stem. Because of the location, it was deemed too risky to try to remove it.
For much of her childhood, Sophia’s treatment consisted of monitoring and addressing issues arising from the tumor such as difficulty with walking, balance, and coordination. As long as the tumor remained Stage 1, her doctors said they could watch and wait. Every few months, the Gulley family traveled from New Braunfels to Houston so specialists in the Texas Medical Center could keep tabs on the tumor.
Sophia, her parents, Heidi and Shane, as well as her older brother, John, stayed together at the Ronald McDonald House on Holcombe during these numerous visits. Many of Sophia’s childhood memories are at Holcombe House, from making goofy videos with her brother, to spending Christmas away from home.
“We haven’t been able to afford Christmas because of everything going on, but Ronald McDonald House made sure that our kids had everything,” says Heidi. “We always feel the love here. From everybody.”
When Sophia was 12, she started experiencing seizures, fainting and dysautonomia. The family rushed back to MD Anderson for an advanced MRI where they learned that the tumor was growing and exhibiting malignant cancer signs. The time had come to get more aggressive with her treatment. She would have to begin chemotherapy to slow the growth of the tumor.
Sophia enrolled in a medical trial specifically for Neuro Fibromatosis patients and only available at MD Anderson. The treatment uses cell-targeted chemotherapy and was not FDA approved for her condition. Sophia’s mother, Heidi, was prepared to battle for months with the insurance company to get approval for the potentially lifesaving trial medication. She was shocked when it was approved immediately and without question. Sophia’s treatment could begin right away.
“It was an answer to our prayers,” says Heidi. “Until now, there was no treatment available for a pontine glioma. To have all of these things happen at once was a sign from God: the availability of a treatment right at the time when she needed it, the immediate acceptance of insurance for a trial treatment, the fact that we had a place to stay right next to the hospital.”
During Sophia’s treatment, the Gulley family, including Auggie, her seizure alert dog, stayed at Holcombe House for 2 months.
“No matter what we needed, Ronald McDonald House would provide it.” Says Sophia’s father, Shane. “There is such a benefit to being around other families here. Seeing what everyone is going through is a reminder of the good things. You develop an extended family, and we all help each other.”
Sophia is now an outspoken, confident, and beautiful 16-year-old whose strength and courage are an inspiration to anyone who meets her. She continues to face medical challenges, but her family’s support and an unwavering faith in God are a central part of Sophia’s strength. “I used to be angry at everyone, and wondered, why me?” Sophia recalls. “I was so mad at my body for failing me over and over again. But now, I call the tumor my “dumb rock,” and I don’t let it upset me as much.”
RMHC Greater Houston is a home away from home for families experiencing an unexpected pediatric medical crisis, as well as families with ongoing critical medical needs in our partner hospitals. By offering a place to stay, and wrap-around support services, families can focus on what matters most – healing together.