IU Dance Marathon serves a more Personal Purpose for IU Twins

IU twins Zach and Alex Brown were born on March 22, 2001 in Edgewater, Maryland. They lived a normal childhood playing sports, watching movies and doing most everything fraternal twins do together. But, 11 years later, life drastically changed for the pair of siblings. 

At the time, Zach was in 5th grade and played recreational football. When Zach’s parents noticed he was becoming more unresponsive and his right eye began to turn inwards, they initially thought it was a sign of a concussion from a hard football hit. 

During one of Alex’s soccer games, the Brown family was cautioned by a nurse to take Zach to the hospital where doctors told the family of five a blood malformation the size of the size of a pea collecting on his brainstem. The malformation was classified as a cavernous hemangioma, which affects about 1 in every 200 people, according to the Cleveland Clinic.  

Alex explains the emotions of watching her brother go through a difficult illness at a very young age.

Cavernous hemangiomas don’t always bleed. But in Zach’s case, the malformation bled twice, first affecting the right side of his face and then affecting his bodily functions. During his second bleed, Zach was unresponsive, vomiting and he was unable to walk to the car to be taken to the hospital. 

In Zach’s one and a half months recovering at Children’s National Hospital in Washington, D.C., Alex was by his side the whole time, watching him advance from his hospital bed to a wheelchair to eventually taking his first steps again. 

Now, Zach and Alex are in the midst of their junior year at IU, and Alex has attended her third IU Dance Marathon , this year as a member of the Hospital Relations committee. 

The dance marathon raises money for the Riley Hospital for Children in Indianapolis, where Zach was treated periodically once he moved to Indiana in 2019. During the marathon, which is held annually in the fall, members are scheduled to dance for 12, 24 or 36 hours depending on the amount of money they individually raise. Within the long hours of the event, food is provided, music is blasted, more money is raised, chants are screamed, bells are rung, line dancing is practiced and Riley kids share their personal health stories to inspire dancers to keep the energy up until the final total of money is revealed.

Zach’s trips to Riley were usually sparked by suspicion of more brain bleeds, but so far they have been only scares. This past summer was Zach’s most recent trip to Riley after he had been hiccuping consistently for over a day, which can be a sign of a stroke or a bleed.

Seeing all the work that Alex does to help Zach and others, Zach speaks to how empowering of a person his sister is.

For Zach, his experience at Riley seems to be a positive one as he says the nurses and doctors were responsive with imaging and testing and always made sure to have follow ups with him and his family.

For Alex, the decision to join IUDM was an easy one, since the organization’s goals are to help kids like Zach. While Alex’s participation in IUDM was inspired by her brother, Zach says he is inspired by how generous, gracious and caring Alex is with her efforts to advocate for not only Zach, but other kids struggling with illnesses as well. 

Alex and Zach have a special bond and to help paint the picture of their interactions with each other, here are some wholesome and funny moments from the twins during our interview.

Even though the mass on Zach’s brainstem remains, he is able to enjoy life at IU by attending football games and friend hangouts with Alex. He works at Bloomington Bagel Company and studies law and public policy in the O’Neil School of Public and Environmental Affairs. 

Amidst all the uncertainty and complications, Zach and Alex say going through it together has made it all easier and that they have known nothing other than, of course, being together.