Carter "Chance" Urschel

Chance Urschel, of Dallas, Texas, passed away on Monday, February 29, 2016 in Dallas, Texas. He will always be remembered as a wonderful son, older brother, loyal friend and an inspiration to all that knew and loved him. Chance was born on December 21, 1995 in Dallas, Texas to Hal and Christi Urschel. While he was only 20 years old when he died, he had experienced a rich and memorable life. Chance was born with a neurological birth defect called Holoprosencephaly (HPE), which essentially looked to the world like cerebral palsy. Chance was trapped in his body throughout his entire life, with a wonderfully funny and kind intellect, but without the ability to talk, walk or move on his own. He was a beautiful and driven person, and an inspiration to those of us who do not have to struggle so much to move or talk. He attended Wesley Preparatory School and then was home schooled during high school. Despite these significant challenges, Chance was the inspiration and motivating force for numerous international scientific advances and research in the area of brain malformations and movement problems in children and adolescence. He hosted numerous scientific research conferences all over North America to try to find new ways for children to communicate and move. Everyone who met Chance was inspired by their interactions with him, and world-class scientists were no exception. Hundreds of doctors and scientists from across the world, who met Chance while his family was trying to find treatments to help him learn to talk and walk, were motivated to not only to help him, but also to push the envelope of their respective specialties to help other children and families to improve the qualities of their lives through more advanced medical treatments and innovative strategies. Specifically because of his day-to-day trials, patients and families with HPE now have real hope of understanding and treating this severe birth defect, through the Carter Centers for Holoprosencephaly and Related Malformations (http://www.carterdatabase.org/hpe) which has state-of-the -art treatment and research centers at Stanford, the University of California at San Francisco, USC, John’s Hopkins, Harvard University, Texas Scottish Rite Hospital, National Institutes of Health (NIH) Human Genome Project and the University of Toronto. Also, Chance helped establish a state-of-the-art, multidisciplinary family resource center at Texas Scottish Rite Hospital in Dallas, Texas. Chance next moved on to create the Carter Initiative for Childhood Motor Disorders, which was an even more advanced research consortium which brought together scientists from many brain and muscle related disciplines, including Orthopedics, Neurology, Neurosurgery, Physical Medicine, Genetics, as well as a host of research scientists. This brain trust under Chance’s guidance partnered with the NIH Institute of Neurology and Stroke to find several breakthrough treatments to help children walk, move and communicate better. For example, this group created a new interface which connected multiple muscles in real-time to a robot and a speech synthesizer to create a “virtual body” for children and teens with severe motor disorders. These new breakthrough treatments have radically improved the quality of these children’s lives and those of their families from all over the world. Finally, Chance took his passion to both talk and move even one-step further and founded the Chance Institute for Motor Solutions. With this group of scientists he was able to tap into the scientific funding of the Defense Advanced Research Projects Agency (DARPA) and then partnered with UT Southwestern Medical Center, University of Texas at Arlington, University of Texas at Dallas and Texas Scottish Rite Hospital to find new treatments using nanotechnology, robotics and bionics to help not only children and teenagers move better, but also our returning veterans from Iraq and the Middle East conflicts as well. Through Chance’s inspiration and efforts, all of these scientific organizations are continuing to work today and everyday – even after his death – to continue his legacy and help children, teenagers and even adults. His vision is that every child will move and communicate successfully in order to achieve their full potential throughout life by moving and communicating in completely new ways that will forever change their interaction with the world around them. All of these breakthroughs were inspired and championed by a young man who was never able to speak even one word for the 20 years of his heroic life. Chance was exceptionally intuitive and understood the family stresses of raising a special needs child, no matter how much they love the child, so he also founded an organization to help support the parents of children with HPE, called Families for Hope (http://familiesforhope.org). This group provides resources, support and information for these parents around the globe and sponsors a biannual research meeting to help parents access the latest scientific treatments which may be helpful for their children. The Family Resource Center at Texas Scottish Rite Hospital is a very important component of this parent support network. Chance grew up in the Methodist Church where the beautiful music, interaction with his peers and knowledge of Jesus Christ thrilled him throughout the week. His Methodist youth group fellowship was so very important to him during his teenage years. In addition to developing a sincere love and passion for God, Chance ministered to his peers and made them better. He was an example of how God uses the people we would least expect to touch our lives in powerful ways. Chance was an avid reader and used this passion to explore many parts of the world and ideas. Although, he participated in many active adventures across the country, including ziplining, skiing and white water rafting, there were many adventures in which Chance could not participate because of his motor impairments. Consequently, he was able to vicariously experience the richness of other countries and experiences through the printed word. Chance loved music, which really enriched his daily life experiences, loved watching movies, which helped to motivate him to move and exercise better, but most of all Chance loved people. He was a very social person and people loved to be around Chance. His close family and friends were always especially rewarded for their interactions with Chance each time that they were blessed with one of his fabulous smiles. For that is how Chance truly communicated, with the sparkle in his eyes and the richness of his facial expressions. He lives on not only in the memory of his subtle and sometimes mischievous smile, but also in what he has taught his parents, family and hundreds of others about movement, development, and the incredible tenacity of a child who never gave up. Chance is survived by his parents, Hal and Christi, and his younger brother Carr, as well as his grandparents, Linda and Don Carter and Betsey Urschel.The Memorial Service will be held at 3pm on Thursday, March 3, 2016 at Highland Park United Methodist Church, in Dallas, Texas with a reception to follow in the Fellowship Hall next to the Sanctuary. In lieu of flowers, memorial contributions may be made to the Family Resource Center at Texas Scottish Rite Hospital for Children, which was set-up to help all families who are struggling with finding information and treatment resources www.tsrhc.org/ccufrc. Online condolences may be made by visiting www.sparkman-hillcrest.com.