Following in the footsteps of a superhero
When Leslie and Will McDow remember their daughter Florence, the image that comes to mind is a picture of a vibrant, animated 6-year-old wearing a pink cape and feeling determined to face a strange neurological disorder with all the strength and courage of superhero.
“Seeing [our] kid hooked up to a bunch of machines on a bunch of drugs … wearing her cape … with this exuberant energy like ‘I can do this’ is just something that has really stuck with us,” Leslie said. “It’s an image I’m proud of and want other to feel inspired by.
“She was an amazing kid. I mean she just fought and fought and fought and fought even with a very, very tired body,” Leslie said.
When Florence was 2, she started exhibiting signs of neurological problems and developmental delays, but it wasn’t until after she turned 5 that doctors were able to diagnose her with Autoimmune Encephalitis, which is a complicated condition that causes the immune system to attack the brain. She fought a four-year battle – which included a multitude of tests, two bone marrow transplants, chemotherapy treatment and a frustrating struggle to identify the disease – with Autoimmune Encephalitis.
Although Florence lost her fight with the disease, Will and Lindsey found inspiration in the date of their little superhero’s death, March 4, 2012, when they realized it could also be thought of as a command – to march forth.
“We kind of were struck by this date and the calling of it,” Leslie said. “You know when we thought about Florence and the strong spirit that she had, we just knew that there was a calling for us to do something.”
Will and Leslie became determined to inform people about the disease, fund research and connect doctors, families and patients to ensure that no one has to face the disease alone.
“Hearing the call to march forth,” Will and Leslie hosted the first Florence Forth Road Race in Durham in March 2013 to benefit The Autoimmune Encephalitis Alliance, the nonprofit organization they began in December 2012, Will said.
“We [tried] to create a silver lining on a very dark cloud by starting The Autoimmune Encephalitis Alliance” and holding a race to support it, Will said in a video on the Autoimmune Encephalitis Alliance website.
“We had an amazing daughter that we wanted to find a way to honor. We also all suffered through a terrible disease that we don’t want another family to go through,” Leslie said. “If [the race and AEA] … alleviate this for someone else, then Florence and her life had a part to play in that.”
To connect the local community around Florence’s legacy, the race logo features a cape.
“The cape is Florence’s energy,” Leslie said. “It represents moving forward, march forth, overcoming, positive energy – you know all of these descriptions that are in that picture of Florence.”
The second Florence Forth Race, which includes a 5K and a 10K, will take place this Saturday at 8 a.m., and begin in the 700 block of Ninth Street in Durham.
After the race, the McDows plan to “further the cape motif” by launching a community-wide effort they call “cape moments,” Leslie said.
Will and Leslie said that their “new segment, cape moments” was not only inspired by Florence’s superhero-like determination but also by the Durham community’s support of the first race, which sold out and had 1,200 participants.
The goal of “Cape Moments” is to give back to the Durham community by uplifting and encouraging the people living in Durham to find and celebrate their moments of strength – the moments where they are wearing their capes.
The McDows envision a nomination process where people nominate their friends in the community who have fought through something difficult with positively and, like Florence, had their very own cape moment.
“Whether it be a business owner, entrepreneurs who have overcome a lot of obstacles to get their products launched … or restaurateurs who’ve overcome different hurdles, we are looking … to showcase the Durham community,” Leslie said.
“I just want Durham to be seen as this caring, amazing community and I think this is a great way to show that,” Leslie said. “Let’s show it.”
FIND OUT MORE
Visit http://florenceforth.org/ to learn more about Florence, the race and Autoimmune Encephalitis.