Corynna Strawser was a 16-year-old girl who had mitochondrial disease and fought through her journey while trying to enjoy life at the same time. Even though her journey was hard, she kept a positive attitude and believed educating people about mitochondrial disease was an important part of the legacy of her life. She strived to use her journey to help and inspire others. Mitochondrial disease changed her life in so many ways.
Corynna was born five weeks premature and tiny, however she grew up living a fairly normal life. When she entered toddler years, it became apparent something in her GI system was not quite right. She had many GI tests growing up, however she participated in activities, excelled at school, spent time with family and friends, and took on a love of dance from an early age.
At 13-years-old, Corynna’s health began to decline. She was hospitalized for the first time for what at first was labeled as idiopathic constipation. Her GI system declined rapidly. She had multiple NG tubes, surgeries, IV’s, tests, and hospitalizations over the next two years.
Almost a year ago, things became severe. She started having neurological issues and other systems became affected. Doctors began testing for mitochondrial disease. She lost the ability to walk, experienced extreme fatigue, nausea, vomiting, pain, abdominal distention, and many other symptoms, and officially entered into intestinal failure.
Corynna suffered a severe decline; her upper body muscles and respiratory system were affected. Corynna received Hospice care at home and focused on enjoying every minute of her life that she could. Corynna and her family, like so many others, experienced physicians who were not educated about mitochondrial disease and didn’t know how to treat her. She was often referred to as “complex” and doctors saying, “we know something is wrong but don’t know what.”
Her wish was that one day others won’t have to experience this lack of knowledge or difficulty in diagnosing. Most of all,
she dreamed of a cure.
Corynna Strawser and family
On December 11, 2013, Corynna passed away. Corynna worked tirelessly to spread awareness,
not only to her entire community, but to tens of thousands of people through media and through social media.
Her courageous legacy is nothing short of remarkable.
The UMDF was formed by families affected by mitochondrial disease. The UMDF provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded nearly $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.
Grants have supported research for one to three years at institutions across the United States, Canada, Europe, and Australia. Recently, projects have included studying what mechanisms in abnormal mitochondria cause muscle dysfunction, enzyme replacement therapy and other potential treatments, as well as developing models for specific mitochondrial disorders.
Mitochondria and Mitochondrial Disease
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.