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Heidi DiMarzio (1978-2019)

Heidi Nicole DiMarzio passed away peacefully in her sleep at home in Gainesville, Virginia in 2019.  She is survived by her husband Kevin Urciolo, her parents Vince and Candi DiMarzio, her best friend and sister Dana Franklin, and brother-in-law Nathan Franklin. She also leaves behind the loves of her life, her nephews Jayden and Alexander.

Heidi graduated from Park View High School in 1997. She continued her education at James Madison University (JMU), graduating in 2001 with a degree in Political Science. While in college, Heidi was selected for an internship with Congressman Alan Mollohan of West Virginia, the state of her birth. As secretary of the Democratic Club at JMU, she attended the inauguration of then Governor Tim Kaine, the thrill of her young lifetime.

Two weeks after her college graduation, Heidi experienced the first of several grand mal seizures. Once medication brought them under control, Heidi began working in Washington DC for a Democratic fundraising organization, her first job. She loved the work, but found changing the Metro three times to get to work very confusing, and was often late because of it. She also experienced another seizure while on her way to work. Neurological testing revealed that her seizures were affecting her memory, and at her parents’ urging, she found another part time job closer to home, and began to experience a more normal life.

Heidi met her husband Kevin on in 2004, and they married two years later on what Heidi would describe as “the happiest day of my life.” While in Las Vegas with her husband in 2008, Heidi began to experience seizures every few days. She was referred to the University of Virginia Medical Center, where it was determined that the seizure activity was related to Thalassemia Intermedia, a Mediterranean blood disorder that Heidi had been diagnosed with at the age of 13.

Around 2010 Heidi began having other symptoms, such as having difficulty keeping food in her mouth. This was followed by tongue-biting and drooling, and difficulties walking. She fell a lot. Again, the neurologists believed her symptoms to be related to her Thalassemia.

In July 2014. Heidi was cooking pasta on the stove and had a seizure. She ended up with second and third degree burns over 40% of her body, resulting in three skin grafts and six weeks in a burn center. While hospitalized, her mother noticed that her left arm would fly up in the air for no apparent reason.

After her hospital stay, Heidi had a hematology appointment where she was seen by a new physician. This new set of eyes performed a thorough examination, and suggested that Heidi might have chorea acanthocytosis. Relief at a diagnosis that could better explain her symptoms was quickly replaced by concern after reading up on the disease.  Kevin continued to research the disease online, leading him to connect with Dr. Ruth Walker of Mt. Sinai Medical Center in New York City, an expert in neuroacanthocytosis diseases.  Dr. Walker suggested further testing, and Heidi was confirmed as having the ultra-rare chorea acanthocytosis after sending a blood sample to Germany.

Two months after Heidi’s official diagnosis in 2015, Kevin took Heidi to Greece for two weeks. In her final years, they traveled to Italy and to London twice, to Germany, Switzerland, Denmark, France, South Africa, Hawaii, and Australia. With Kevin pushing her wheelchair, they enjoyed hiking, and spent every weekend going someplace special, even managing to visit every museum in Maryland, DC and Virginia.

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