When Katherine Dickens was born in 2004, she seemed to be healthy and developing normally. But just a few months later, she began making unusual motions with her arms and her eye would wander – she was having seizures.
Katherine was diagnosed with infantile spasms at 4 months old, but the cause wasn’t discovered until nearly a year later: Katherine was missing an enzyme in her mitochondria. By then, she had regressed cognitively, losing her hearing and vision. Soon, she needed a feeding tube to provide nutrition and fluids. A beautiful little girl was slipping away.
Now, Katherine is fairly stable. She still has seizures daily and uses a feeding tube. Although she can’t walk or run, she has a strong, happy personality and loves to roll on the carpet and swim in the pool.
To honor Katherine and her continuing battle, the Dickens family of Denton, Texas established the Katherine Dickens Research Fund. Through the United Mitochondrial Disease Foundation (UMDF), money donated to this fund goes to research in Katherine’s name.
UMDF was formed by families affected by mitochondrial disease. Like the Dickens family, UMDF founders wanted to help others affected by the disorder. The Foundation provides support to families and funds research into 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. Each year, up to one in 2,000 children will develop a mitochondrial disease by age 10. Most of these affected children will not survive beyond their teenage years.
Through research, the medical world will one day have the resources to help children like Katherine win the battle against mitochondrial disease. Until then, please help the Dickens family and UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Katherine Dickens Research Fund.