Meet Taryn Noel Fogel, born December 5, 2001. She suffers from a very rare mitochondrial disease caused by a single base pair change in her DNA on chromosone #2. This change alters the amino acid composition in one of her protiens which is specificially involved in her mitochondria, the power plants of her cells.
Taryn has mutations in both copies of her genes, the BCS1L gene, 2q33-37. This is a progressively fatal disease known as Gracile Syndrome. It is not known what course it will take since Taryn’s diagnosis involves another disease called Bjornstadt syndrome, however, the longest a child with Gracile has ever lived is nine years old.
To honor Taryn and her continuing battle, her parents established the Taryn Fogel Research Fund. Through the United Mitochondrial Disease Foundation (UMDF), money donated to this fund goes to research in Taryn’s name.
The UMDF was formed by families affected by mitochondrial disease. Like the Fogel family, the 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. Every thirty minutes, a child is born who 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 one day will have the resources to help children like Taryn win the battle against mitochondrial disease. Until then, please help the Fogel family and the UMDF bring “Hope.Energy.Life” to everyone affected by mitochondrial disease by donating to the Taryn Fogel Research Fund.