Justina Pelletier has been in the news lately. She’s a 15-year-old girl from West Hartford, CT who loves ice skating and going to the mall with friends. However, she’s not in the news for her accomplishments.
Justina and her older sister struggle with an invisible condition called mitochondrial disease. It is caused by a disruption in the cellular energy centers of our bodies, the mitochondria. The crisis inside her cells isn’t always apparent on the outside. But inside, they are teetering on a precarious cliff where the body’s demands exceed the body’s ability to supply enough energy to live and to thrive. For mito patients, it’s more than just being tired. It’s never having adequate fuel to operate necessary functions of our body. Justina’s gut stopped working a couple of years ago, a common problem for mito patients, resulting in a tube to help her digest and eliminate food. Mito patients also struggle with muscle weakness, pain, memory loss, erratic blood pressure, vision problems, hearing problems, and debilitating fatigue.
But, this is where Justina’s tale unravels from the pursuit of adequate medical care to a complicated legal debacle that, sadly, is happening all too often with mitochondrial disease patients and their families. At MitoAction, a family advocacy and support organization, we receive nearly four calls a month from families across the country facing scrutiny from their doctors when it comes to this difficult-to-diagnose-and-treat disease. In extreme cases, such as the Pelletiers, parents lose custody of their children for “medical child abuse.” This epic failure of the system is just too alarming to remain silent about.