Photo Courtesy of Derek Flake
A rare diagnosis can do much to make a person feel alone. Without the promise of companions on the road ahead, a journey can seem daunting or perhaps even nearly impossible. Yet there is hope; for, even if a condition is extremely rare, one can always turn to advocacy in order to connect many to available resources.
Derek Flake, special education advocate from Memphis, Tennessee, has done just that. Flake is a quiet, thoughtful man - the type that chooses words carefully and only utters a sound when he believes it is completely necessary. He is a tall, gentle man with a peaceful presence. He gives off the sense of a man in possession of both a quiet wisdom and strength.
“Bleeding disorders are hard to diagnose and extremely rare,” Derek Flake says. Flake is no stranger to this reality. His own diagnosis came as a result of the diagnosis of his daughter, Makenzie. “The trajectory of our family changed when Makenzie was about four due to the fact she was the first to be diagnosed in my family,” Flake says. Flake, his wife and eldest daughter have also been diagnosed with bleeding disorders - he and Makenzie with Von Willebrand’s Disease (VWD), while his oldest daughter Taylor was diagnosed with Factor VII deficiency.
Derek first approached me about a story regarding alleged disability discrimination with his daughter, Makenzie, being the subject. The story itself took a few twists and turns, demanding much research along with contacting the Loudoun County Public School System to allow for their side of the story. After hearing about his varied life and career, I readily agreed to write a story, published in a recent edition of the Loudoun Times-Mirror. He told me then that his daughter understood the importance of advocacy, informed by her personal experience. “Makenzie understands the importance of a level playing field,” Flake says, “because of the work my family has done for years…”
Derek and his wife Sherita are the founders of The Mid-South Hemophilia & Bleeding Disorders Foundation. Founded in 2012, the non-profit “seeks to provide awareness, advocacy, and education supports in order to prevent additional fatalities because of uncontrollable bleeding." Flake, himself diagnosed with VWD, has made it his mission “to be an advocate for the bleeding disorder community.” In addition to his work through the non-profit and as a special education advocate, Flake is a reverend and a community organizer.
Despite the challenges faced, Flake makes it clear that Makenzie does not allow her disability to hold her back. “She makes everyone feel comfortable around her because she does not allow her disability to stop her from being her best,” Flake says. This sentiment shines through especially in her passion for dance. A praise dancer at her church, she is also a pre-professional company dancer. Her future plans include pursuing a career in dance performance and obtaining a college degree. Dancing for such teams as the Washington Wizards, Memphis Grizzlies and even performing at the Kennedy Center in Washington, D.C., have helped her get that much closer to achieving her goals.
When asked for the source of his hope, Flake answered by referencing his faith. “…my hope is built on nothing less than Jesus Christ and his righteousness.” His faith provides an anchor in the face of adversity. “This hope provides a solid foundation that withstands the storms of life,” Flake says. His hope is also found in the advocacy he engages in - his relocation to Northern Virginia has given him the opportunity to serve on the Loudoun County Disability Advisory Board, Virginia Educational Law Task Force, and as a volunteer mentor at a local and state juvenile justice facility. “This work that has primarily been as a volunteer restores my hope and ignites my passion to be a bridge of hope to independent living, inclusion, and equal access.”
While those diagnosed with blood disorders may not possess scars that can be visibly seen, invisible ones are still present. “…my family and I carry invisible scars,” Flake says. “Those scars are deep and are reflective of the very essence of what it means to have a bleeding disorder,” he continues. He goes on to explain that people with blood disorders have “clotting issues,” meaning that they possess a proclivity towards having more intense bleeds if injury is sustained. “…When your child has been discriminated against due to their health impairment from participating in sports, graduation speeches, and certain academic opportunities it leaves scars that you can either allow to bleed into bitterness - or you can infuse those scars with information, awareness, and advocacy that helps others and heals wounds,” Flake says.
The challenge remains in the unpredictability inherent in possessing a bleeding disorder. “Earlier this week my daughter had to be infused in the ER for a bleed from an accidental jab in the throat while participating in a sports activity,” Flake says. Yet injury is not the only manner in which bleeding may be an unexpected result. “On other days some uncontrollable bleeds can just occur with no trauma such as mouth and nose bleeds,” Flake says. “Our lives are affected daily because it is an ‘invisible’ disability,” Flake says.
Through it all, you can count on Derek Flake
to keep his efforts to cultivate hope through advocacy alive. It has been clear throughout our conversations that he is on a mission for justice, not only for his own family, but for students with disabilities throughout Loudoun County and beyond. The underlying motivation behind Flake’s tenacity is a desire to help persons with disabilities find their own voices; and, Flake is unlikely to rest until this goal is achieved.