Charles E. Davis, Sr.,

Type of Porphyria

Caretaker

Charles E. Davis, Sr., nicknamed, Digger,  served honorably in the United States Air Force for 25 years, retiring in February 2012 at the rank of Lieutenant Colonel.  A highly experienced F-16 Command Pilot, he flew 115 combat missions and is combat-decorated, including the award of seven Air Medals and the Distinguished Flying Cross with Valor. His Air Force career came to an unexpected end following a diagnosis of Relapse-Remitting Multiple Sclerosis in August 2009. Since that time, he has managed his condition through several treatment regimens and currently receives Ocrevus infusions twice annually.

Following his military retirement, Mr. Davis continued his professional service as a Department of Defense contractor with Northrop Grumman.  In October 2023, he made the decision to fully retire from professional work in order to become a full-time caretaker for his wife, Ginger, whose Acute Intermittent Porphyria (AIP) has progressively worsened and resulted in multiple emergency room visits and hospitalizations each year.

Ginger’s AIP diagnosis was made in the summer of 2023 after nearly 31 years of unexplained symptoms and chronic pain. Mr. Davis credits her gastroenterologist, Dr. Dino Beduya, for his persistence in continuing diagnostic testing when answers were elusive. That perseverance ultimately led to the correct diagnosis and referral to hematologist Dr. Bo Zhao, whose care has significantly improved Ginger’s pain management and quality of life.

Mr. Davis and his wife were married in November 2013 and share a blended family of seven adult children. He formally adopted Ginger’s oldest daughter, Tori. Together, they are proud grandparents to four grandsons, ranging in age from six months to nearly four years old. Mr. Davis considers it a privilege to serve as Ginger’s primary caretaker and recognizes that his ability to retire early and provide full-time support is a blessing not afforded to many families navigating rare diseases. His lived experience as a caregiver, patient advocate, and spouse to someone with porphyria informs his commitment to supporting others facing similar challenges and contributes meaningfully to his role on the American Porphyria Foundation Member Advisory Board (MAB).  

He holds a Bachelor of Science in Information Systems from Virginia Commonwealth University (1991) and a Master of Aeronautical Science from Embry-Riddle Aeronautical  University (2002).