Brandon David Harris was born on January 31, 2003, in Des Moines, Iowa. His journey began at birth when he failed a newborn hearing test. We took him for more testing to find out that he had severe to profound hearing loss. We tried hearing aids and had an evaluation for a cochlear implant. At that point, he was a little behind with his head control and other milestones. He was evaluated at the University of Iowa Children’s Hospital by a pediatric neurologist. She told us she believed he had a possible mitochondrial disease. We had no idea what that meant. The physicians did a muscle biopsy, MRI, spinal tap, blood test, and we still didn’t have an answer.
In December of 2003, things took a drastic turn with his condition. We were on a family vacation at Walt Disney World, and Brandon became so sick that he was admitted to Orlando Children’s Hospital. He was vomiting, lethargic, and had an infection. Once we returned to Iowa, he started having seizures. He was still having episodes of vomiting and needed surgery for a feeding tube and fundoplication. He also was having issues with hypoglycemia, especially when he was sick.
In August of 2005, we relocated with the Marine Corps to Quantico, VA. At this time, we started seeing some of the nation’s best pediatric specialists at Children’s National Medical Center in Washington, D.C. Brandon started having more seizures, UTI’s, respiratory issues, and GI problems. His neurologist did a repeat MRI, which showed changes in the globus pallidus; this is reflective of Leigh’s Disease. None of his genetic tests gave us any answers. The only test that showed the physicians anything was the MRI. They all felt Brandon had presumed Leigh’s Disease. With this diagnosis, we were heartbroken.
Brandon’s journey continued to get more difficult. He was constantly being flown by helicopter to the hospital because his condition had gotten worse. He ended up having a tracheostomy, which later resulted in him being ventilator dependent. He was put into a coma in 2008 because he was having uncontrollable seizures. He started having pseudo obstructions of the bowel and ended up with a central line for TPN. Throughout all of these times of being sick and the progression of Leigh’s Disease, Brandon always smiled and gave us so much love. Dave, Jordan, and I feel very blessed that we were able to spend so much concentrated time with Brandon. We use to love cuddling him, kissing him, and making him smile.
As Brandon’s proud parents, we continued to fight for him until he told us he couldn’t do it anymore. On June 8, 2012, at 9 years old, our sweet son became an angel in Heaven. Our family is heartbroken, but we know Brandon would want us to do something to help with research to find a cure. Without research, there is no hope. We would like to share Brandon’s life with all of you. He has a care page, which has many pictures. You can go to www.carepages.com, and his page name is harrisbrandon.
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 $10 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 Brandon win the battle against mitochondrial disease. Until then, please help the Harris family and UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Brandon David Harris Research Fund.
We thank you for your love and support,
The Harris Family