How do you measure a life? Is it in years, or is it measured by the lives you impacted, the smiles you shared, the memories you made, and the hearts you changed? The life of Carter Chancellor “Chance” Urschel might reveal the answer.
At just four months old, Chance was diagnosed with Holoprosencephaly (HPE), a rare condition with many of the same impaired muscle symptoms and complications as Cerebral Palsy. At the time of this diagnosis, Chance’s parents, Hal and Christi Urschel, were told he likely wouldn’t live for more than a year. While they were devastated, Hal and Christi’s focus soon shifted from Chance’s life expectancy to their son’s quality of life.
HPE affected Chance’s walking, talking, eating, and swallowing abilities. He also suffered from dystonia, which is characterized by involuntary tight muscles, and as a result, Chance used a wheelchair. Even though Chance was unable to talk, he could communicate through his eye gaze and facial expressions.
“When I came into the room, Chance would give me one of his wonderfully charming smiles that so clearly communicated, ‘Hi Dad, I am so glad you are here,’” Hal said, “Regardless of how hard my day had gone, once he beamed a smile at me, life became pretty good. He overcame many challenges, physically and emotionally, and yet he had so much inner strength. He never gave up and always had a wonderful attitude and a smile, no matter how much he was suffering.”
Hal and Christi were able to find adaptations for Chance’s physical limitations, helping him enjoy activities like horseback riding, river rafting, ziplining, and snow skiing. However, they found it harder to do the same with his social limitations, even though Chance had a strong desire to be around and communicate with able-bodied children. While he enjoyed attending church and Sunday School, Hal, and Christi wanted more opportunities for Chance to socialize beyond just Sunday mornings.
“We found a wonderful school that allowed Chance to attend class for recess and P.E.,” Christi said. “When we took him to school, different children would take turns being his helper on the playground and during gym class. The school found it very beneficial, and parents asked, ‘Who is this Chance Urschel? He must be a rockstar because my child is talking about how they got to be Chance’s special helper for the day.’”
Hal also described his son as a pioneer. Chance’s perseverance and determination in dealing with his daily, difficult muscle dysfunctions helped advance scientific research on brain malformations and movement problems during his life. Doctors and scientists from around the world came to meet and learn from him, then, inspired by Chance’s resilience, took what they learned back to their respective areas to try to help children and families with similar conditions.
In his hometown of Dallas, Texas, Chance also made an impact at the hospital he attended. “We spent a lot of time at Texas Scottish Rite Hospital for Children,” Christi said, “They were a wonderful partner in helping us to care for his physical needs. But when we were in that environment, it was difficult for Chance to see other patients that were hurting. Once, we saw an incredible family struggling to get their child and his wheelchair into their car because they did not have a wheelchair-accessible vehicle. Chance stared at us, obviously concerned for the child. We went over and immediately made a connection with the family and subsequently helped them secure a wheelchair van. When Chance went to present the new van to them, he was both delighted and excited to see this young man be able to easily get in and out of his own vehicle and not face the difficulties they had encountered before.”
Chance had to do therapy several times a day to both help relax and strengthen his muscles, and he stayed focused on these tedious, yet essential exercises by watching his favorite Disney animated movies. In fact, Chance watched “The Lion King” so many times that when he attended “The Lion King” musical on Broadway with his family, he turned to them with a knowing smile when an actor messed up a line. As Chance began to use a standing therapy device to help him stay upright when needed, another hobby—baking—helped him to better tolerate the time in the stander and simultaneously make memories with his mom while staying motivated.
“He loved cheesecake,” Christi said, “So we started making cheesecake—something that was quick and easy to bake—and then we started making pies. Chance loved to make apple pies because we had an apple peeler and could help him use that while he was in the stander. He thought that using the apple peeler was so funny, and he loved creating what we called ‘apple snakes’ that were made as a result of removing the skin from each apple in preparation for a new pie.”
Chance enjoyed the full process of baking: planning, baking, and especially eating! When he and his mom realized they made more pies than they needed, Chance’s family discovered something else he enjoyed—serving others. On a weekly basis, Chance and his mom would decide to whom they wanted to deliver an extra pie and proceeded to personalize each person’s pie box. His parents discovered that Chance valued giving more than receiving, and he loved thinking of others and making their day.
“In one instance, we had pies to deliver to two teachers,” Christi said. “Chance was so excited. This was a big deal—we delivered the pies to the teachers while the students were in their classrooms. We worked all week, and that day didn’t let either of us down, but when we got in the car to go home, Chance had the biggest frown on his face. I asked, ‘Chance, are you sad that we’re leaving, that our delivery is over?’ Tears came down his face, even though he didn’t cry very often. I said, ‘It’s okay, we’ll bake a pie tomorrow! To whom do you want to deliver it?’ and he just perked right back up, showing that big Chance Urschel smile.”
Hal and Christi described this revelation as an “aha” moment, as they realized that the opportunity to serve others and contribute to his community was something Chance was missing in his life. At church, they began to help Chance hold the door, greet people, and hand out donuts to the youth group at church. In his small group, Chance would listen to the struggles of his fellow boys. Hal said there were times when one of his fellow group members would thank Chance, as they could tell how much he cared about them by how attentive he was when they were sharing.
Chance’s younger brother, Carr Urschel, also valued his loving heart. “He was an unlimited person with a very limited body,” Carr said. “Such a happy guy, but his life was immensely difficult. He couldn't scratch his nose if his nose itched, much less move his leg if his leg was cramping. He was in pain frequently, and he got sick often, but throughout all of it, he was the happiest person I've ever met in my life. When I find myself getting upset, or when I find myself being ungrateful or entitled, remembering how someone could be so incredibly joyous from the bottom of their heart after facing such daily adversity is truly impactful to me.”
Chance far surpassed his original doctor’s predicted life expectancy, living to be 20 years old. At his funeral in 2016, emails flooded in from his former Small Group members, who wrote about how impactful it was that while Chance had so many challenges of his own, he took the time to comfort them during their times of stress. The Urschels carry on Chance’s legacy through the Family Resource Center they founded at Scottish Rite Hospital for Children and the creation of Chance’s Cafe at Highland Park United Methodist Church. At Chance’s, crew members with disabilities, volunteers, and customers come together over treats and smiles.
“Chance was fulfilled by the act of doing something for someone else,” Christi said. “That act not only built his self-esteem—he was proud and felt like a part of the community—but it also became a way to bridge his disability barriers with someone else and provide him with the connection he so greatly desired. Chance’s Cafe was born from the desire to give these special young people a way that they could contribute, be valued, and which they could be truly welcomed. Chance’s provided a way they could also serve; by serving, they would have the opportunity to interact with able-bodied children, youth, seniors—everyone in their community.”
Chance inspired many people throughout his life. He lives on through Chance’s Cafe and through the Urschels’ memories of him: every birthday, every beach trip, every smile, every holiday, every moment. His family and friends remember him as kind, funny, intelligent, and a brilliant light to those around him.
So, how do you measure a life? The Urschels have found their answer:
“We have hundreds of happy memories,” Christi said. “How fortunate are we? Here was a child for whom we were given so little hope, but we serve a great God who is in control. Chance had a rich and abundant life, just as we did as well.”
“Chance realized the meaning of life incredibly quickly, partly because of his physical disabilities and partly because of his relationship with God,” Carr said. “He derived so much incredible joy from making other people happy. And in my opinion, that's what life is all about. For every single person—the caretakers, all my friends, me, my parents—the mark that Chance has left on us is immeasurable.”