The gift of Sophie
The dying wish of a teenager sparked the creation of the Be Loud! Sophie Foundation and UNC Lineberger’s Adolescent and Young Adult Cancer Support Program, which has become a national leader in the movement to help young people stay true to who they are despite a cancer diagnosis.
Sophie Steiner, 15, lying in bed on the fifth floor of UNC Children’s Hospital, asked her parents for one last thing. None of them had any idea this one last thing would transform cancer support services for teens and young adults at the UNC Medical Center. But her request has done just that.
Sophie had been battling cancer for almost a year and treatment options had run their course. Yet, she was thankful her family was so plugged into the Chapel Hill and university communities that she never wanted for anything and was never alone unless she wanted to be. She was thankful that hundreds of people rallied to support her when she was stuck in the hospital for weeks at a time, thankful for all her friends being close by and ever helpful.
When Sophie saw other teens in the hospital, she noticed most of them had no such support. They were alone for long stretches. Their parents didn’t work a stone’s throw from the hospital, like Sophie’s did. Their friends couldn’t just swing by after class. Their dance teachers couldn’t come by for an impromptu lesson in an empty corridor. Their favorite sports team – say, the UNC field hockey team – wouldn’t drop by to give them jerseys with their names stitched to the backs, like the team did for Sophie.
The teens and young adults Sophie saw received great medical care but it wasn’t the medical staff’s job to relate to teenage patients or to help them deal with a cancer diagnosis while also trying to figure out who they were as people during an incredibly transformative time in their lives.
Sophie fought through the worst prognosis imaginable – a rare cancer with a treatment that didn’t work for her – to stay true to who she was. And who she was was a no-nonsense, tell-it-like-it-is, authentic, opinionated, talented, passionate teenager desperate not to let cancer define her. About a year before she got sick, she wrote a poem that included the lines: “Be Loud, and move with grace, explode with light, have no fear.” In the hospital, as she put that poem to the test, her family and community rallied to help her. And Sophie couldn’t help but think of other teenage patients on the fifth floor.
And so, one day Sophie pulled her parents aside and asked them, quite simply, to help these kids. When she’s gone, she told her parents, please help them.
Through their grief, Sophie’s parents Niklaus and Lucy Steiner heard their daughter loud and clear but didn’t know what such help might look like. So, when Sophie passed away in September of 2013 and her family wrote her obituary, they put a line at the end that read: “In lieu of flowers, please consider making a donation to the Sophie Fund.”
“We really didn’t know what that meant,” said Niklaus, who is the director of UNC-Chapel Hill’s Center for Global Initiatives. “Maybe we would buy gas cards for parents and friends of kids at the hospital to make it easier for them to travel here from other parts of the state. Maybe we would be able to buy stuff to help these kids. We honestly didn’t know.”
Within a few months of Sophie’s memorial service, people had sent so much money to the Sophie Fund that the Steiner’s youngest daughter Annabel told her parents, “You know, this is enough money to start a foundation.”
And the Be Loud! Sophie Foundation was born. Named after Sophie’s poem, the foundation dedicates itself to supporting teens and young adults, to ensure they receive age-appropriate medical care and psychosocial support at the UNC Medical Center.
Read more on the UNC Health Care website.
