Breylon Senn was born on May 9, 2008. Breylon’s fight against Mitochondrial Encephalomyopathy, which is a form of mitochondrial disease, started during infancy. ‘Mito’ as we call it, is a progressive disease that occurs when the mitochondria of our cells fail to produce enough energy for organ function, leading to organ failure; therefore it can affect the whole body. In Breylon’s case, his neurological, muscular, respiratory, gastro-intestinal, cardiovascular and nervous systems are all affected and it has led to many serious and severe issues for Breylon including seizures, cognitive impairment, severe gastro paresis, mal-absorption, intestinal failure, low muscle tone, GERD, lung disease, sensory processing issues and hearing loss just to name a few. Breylon was 2 when he was no longer able to eat by mouth and required a gastrostomy tube for nutrition. At 2 ½ years old he was in complete intestinal failure and was no longer able to use his gastro-intestinal system therefore he requires a central line for IV nutrition called TPN. Breylon has spent a great majority of his life in the hospital. Somehow, he always wears a beautiful smile.
‘Mito’ affects about one out of 4,000 individuals in the United States. There is currently no cure for ‘mito’ but rather supportive care of controlling the symptoms of the disease. Of all children who are diagnosed with mitochondrial disease before the age of 5, like Breylon was, nearly 80% will not live to see their 20th birthday. Through this research fund, we are trying to change that.
The 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 $8 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 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.
Through research, the medical world will one day have the resources to help children like Breylon win the battle against mitochondrial disease. Until then, please help the Senn family and UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Breylon Senn Research Fund.