Six-year-old Florence McDow loved the pets in her neighborhood. She loved going to George Watts Montessori Magnet School and her classmates there. Her smile was infectious; her spirit was indomitable. And her very best friend was her older sister Laura Mishler.
In April 2008, Leslie and Will McDow first realized their daughter was sick. At the time, they knew only that the disease focus was neurological. It wasn’t until almost three years later that a diagnosis was made: autoimmune encephalitis.
The rare condition, which causes the body’s immune system to attack the brain, can result in both neurological and psychiatric symptoms that range from movement disorders to mood impairment. If diagnosed early, the effects of autoimmune encephalitis can be reversible. Sometimes, however, the disease can result in permanent damage or death.
During her four-year battle with autoimmune encephalitis, Florence endured extended hospital stays and underwent two bone marrow transplants. Through it all, she remained an inspiration to her family and those around her, a testament to strength in the face of adversity.
“My favorite story of Florence’s unending compassion, even in the face of personal pain, occurred at 2am one night in the hospital,” Leslie says. “A phlebotomist came into Florence’s hospital room to draw blood. She flipped on the overhead lights, awaking both Florence and me. The phlebotomist roughly tied a tourniquet around Florence’s small arm, stuck the needle into the vein and drew several vials of blood. Instead of feeling mad at being woken up and crying from the pain of the needle stick, Florence reached out both arms to the phlebotomist as she packed up to go and simply said, ‘Hug, hug.’ The woman was amazed.”
On March 4, 2012, Florence lost her battle with autoimmune encephalitis. Her death was devastating to her parents, to her older sister and to everyone who knew her. It was unthinkable that a 6-year-old child could be taken from a family who wanted nothing more than for her to get better.
In December 2012, nine months after losing Florence, Leslie and Will began the Autoimmune Encephalitis Alliance as a way to help coordinate research and treatment across medical disciplines, increase awareness and accelerate the search for a cure. Their first event is the inaugural Florence Forth 10-mile and 5K race Saturday, March 2.
“Will and I leaned hard on running to get us through many difficult days of not knowing how to help Florence with this unknown disease,” Leslie says. “Organizing a road race seemed fitting for our family to begin to build community and awareness around Florence’s story and the many other kids like her.”
Recently, the disease received national attention following the release of Susannah Cahalan’s memoir Brain on Fire: My Month of Madness. Susannah also suffered from autoimmune encephalitis, and underwent nearly $1,000,000 of medical testing before her condition was correctly diagnosed. In January, the McDows met Susannah, who will be in town for the Florence Forth race.
“For us to have [Susannah’s] support is tremendous, as we all are working to help other families facing this disease and to assist medical centers in diagnosing and treating the disease quickly after onset,” Leslie says.
For Will and Leslie, the upcoming race is a way to honor their daughter’s memory. The name Florence Forth comes from several places. It commemorates not only that Florence passed away on March 4, but also that the day has become a command: March forth. It describes the strength of a little girl who fought so hard for so long, and it reminds those who loved Florence to carry on—to march forth—with her memory in their hearts.
“Florence Forth is both a tribute and a command for us all to build a community that improves the lives of children who face autoimmune encephalitis," Leslie says. "Florence Forth is a reminder that no family should suffer this horrible disease alone. And Florence Forth contains the spirit of a little girl wearing a super cape with a twinkle of mischief in her eye that says, ‘I will change the world.’”
The race will begin on Duke University’s East Campus, with the 10-mile race starting at 8am and the 5K starting at 8:30am. Proceeds will help Duke Children’s Hospital in developing the first Autoimmune Encephalitis Center of Excellence.
For more information and to register, click here.