State College musician looks to community to help daughter get treatment for rare disease

As a local musician, Jackie Brown has performed at countless events to raise money for people and causes across central Pa. Now, the community is coming together and supporting Brown and her daughter, Trishanna Hodge.

Trishanna, 16, has battled complications from Hirschsprung’s disease — a rare disease of the bowel — for the majority of her life. The condition has recently escalated to the point she is in persistent, debilitating pain, which can result in multiple trips the emergency room per week. Struggling with health care costs and the limitations of Pennsylvania’s Children’s Health Care Program (CHIP), the family has created a GoFundMe page in an effort to raise money for Trishanna’s treatment.

“She’s losing weight,” Brown said. “She has to go to ER at least twice, sometimes twice a week, just to stay stable.”

The State College family is taking a multi-faceted approach to treating Trishanna’s condition, which has included working with local health care professionals, Children’s Hospital of Philadelphia, and now Cincinnati Children’s Hospital Medical Center, a world-leader in treating pediatric Hirschsprung’s disease.

“The first trip to Cincinnati was successful because we found an excellent team of doctors to understand how to treat Trishanna and manage the disease,” Brown said.

This was the initial consultation, which enables the beginning of three weeks of testing and treatments focused on Trishanna’s colon, as well as an assessment for how to manage the condition in the future. However, beginning the plan is contingent on the family’s ability to pay, and in the meantime Trishanna’s condition is worsening.

“They have submitted the package to the insurance provider but are moving slowly through some bureaucratic problems. She hasn’t been treated yet,” Brown said. “We are still waiting.”

Hirschsprung’s disease is present at birth and is when a person’s colon is missing nerve cells, according to CCHMC. It is a rare disease, with unknown causes, and numerous possible symptoms that result from complications. Currently, western medicine treats is with a variety of approaches, including but not limited to surgery and intestinal transplantation.

“Every Hirschsprung’s disease is different,” Brown said. “When they grown up, and the complications that happen are completely different, or other Hirschsprung kids could have other things too, like IBS (irritable bowel syndrome).”

Since every case is different, CCHMC’s approach is more like a program that begins with extensive evaluations to determine the best course of treatment. The support the GoFundMe page has provided so far — more than $5,200 donated since the page was set up last month — is how Trishanna was able to be evaluated.

“For the community to come together like (this), it just makes me tear up,” Brown said. “It just shows me how much we love each other.”

In addition to the GoFundMe campaign, a benefit concert for Trishanna is being planned for January, featuring local bands, including Brown’s Gill Street Band, with which she has been able to remain active throughout Trishanna’s health complications.

This story was originally published November 17, 2019 at 8:26 AM.