Team Waz at the 2018 Chicago Energy for Life Walk.  Lora is seated and wearing sunglasses.

They’ve Been Walking for 20 Years

Lora Lacey was in her senior year of high school when she suffered a viral infection that affected her muscles. At the time, her mitochondrial disease was barely noticeable and she would not get an official diagnosis of mitochondrial myopathy until she was 19 years old and in pharmacy school.  Because of her illness, Lora finished school early and quickly began a career in the field she loved.    A normal day as a pharmacist can be exhausting.  Now 42, the Monee, Il, resident cut back her work schedule and uses a ventilator at night to give her respiratory muscles a rest.  Despite her fatigue and pain, she rises each day to help the people who are depending on her.

Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the mitochondria—small, energy-producing structures that serve as the cells’ “power plants.” Nerve cells in the brain and muscles require a great deal of energy, and thus appear to be particularly damaged when mitochondrial dysfunction occurs.  Although there is no specific treatment for any of the mitochondrial myopathies, physical therapy may extend the range of movement of muscles and improve dexterity. The prognosis for patients with mitochondrial myopathies varies greatly, depending largely on the type of disease and the degree of involvement of various organs. These disorders cause progressive weakness.

Lora is trying to live to the fullest, despite her illness.   In 2012, she married Joshua, the love of her life.  He understands her illness and accepts her disability.  Earlier this year, the couple faced a new medical challenge.  Lora was diagnosed with breast cancer.  She faced the diagnosis and subsequent surgery with the same grace and courage she shows with her mitochondrial disability.  Her family and friends continue to be a source of support.  They formed Team Waz and, for the past 20 years, they have been walking in her honor since the first UMDF Walkathon in Chicago.

TELL US YOUR STORY