Our Olivia Skye Hesse, or Liv, as we all know her, has a high energy personality with a low energy disease. She is passionate about her friends, her family, her dogs, and her music. She loves fashion, Chinese dumplings, and any kind of soup. She is strong-willed, yet one of the most giving, loving, caring and loyal people you could ever meet.
Liv was one of the most active kids in a neighborhood filled with kids. A natural born leader, she would lead the neighborhood in adventure and exploration. As a toddler, she had a left eyelid that began to droop. Around 11, this droop became more pronounced. She went to a prominent eye doctor who told her she had a “lazy eye,” that an eye patch was what she needed. It became difficult for Liv to keep up when we’d go on family hikes. She acquired the nickname: “Jellybones.” As her eye droop worsened, Liv got a second opinion from another eye doctor. He told us, “Either it’s not a big deal, or it’s something really bad.”
From then on, things spiraled out of control. She went down to NYC and got an electro-retinogram, which showed patchy retinal changes. A blood test was obtained and sent to Baylor College of Medicine, which confirmed Liv had Kearns-Sayre Syndrome. She was missing a 10 kilodalton piece of mitochondrial DNA, vital to meet the body’s energy demands. Liv developed type 1 diabetes at age 16, and she had a pacemaker placed at age 17. She suffers from progressive hearing loss. She has difficulty learning. Because her gait is increasingly wobbly, strangers often ask if she’s drunk. We have learned that all of these disparate symptoms are actually part of one underlying condition.
When Liv was first diagnosed at age 12, we worried that she would lose the spunk and vigor that has made Liv, Liv. Over the past 8 years, we have seen her confidence and playfulness slip away as her condition worsens. At age 20, Liv is working hard to become an independent, productive young adult, all the while facing an uphill battle with a horrible, progressive, implacable disease.
To honor Liv and her continuing battle, Liv’s two older siblings and biggest fans (Allie and Jordan) and loving parents (Debbie and David) of Branford, Connecticut established the Olivia Skye Hesse Research Fund. Through the United Mitochondrial Disease Foundation (UMDF), money donated to this fund goes to research in Liv’s name.
The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The Foundation provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded more than $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.
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.