Leslie Cora Whitt-Williams was born in Cincinnati, Ohio, on June 17, 1988, to Roy and Allisa Whitt. Growing up, Leslie was sickly as a child with illnesses lasting longer than her sister, but we never knew why. She graduated from high school as Valedictorian. She went on to college at Case Western Reserve University, but the summer of 2007, after her first year of college, she went to North Carolina to work as a camp counselor. It is there where Leslie’s problems really began. The staff at the camp found her unresponsive with no pulse, blue lips, and a blood sugar of 19. They had to jumpstart her heart. This began our journey of many different doctors and many different diagnoses that did not make any sense.
In January of 2008, she saw a mitochondrial disease specialist and that began the long journey. Leslie was losing weight from severe nausea and vomiting. She started having seizures, migraines, muscle pain, and weakness. She was passing out, but her blood sugars were fine. She lost so much weight she had to have a g-tube and a separate j-tube placed. She continued to have feeding problems, intolerances, and swallowing difficulties, and in January of 2011, she was put on 24 hour TPN (total parental nutrition). Therefore, she had to have a triple lumen hickman catheter central line placed in her chest.
In the last 18 months, her health really deteriorated. She lost some hearing and used a hearing aid. Her vision was affected, and she had retinal damage. Her lungs took a hit, and she was on oxygen 24 hours a day. Her bladder got multiple infections, and she had to have a Foley catheter placed. She was on multiple IV medications for reflux, seizures, UTI’s, dysautonomia, fluid retention, nausea, and vomiting. On October 2011, we almost lost her to urosepsis, but she surprised everyone. This year, 2012 was not kind to Leslie, and her health continued going downhill. She has had many seizures despite the multiple medications, many UTI’s, and breathing issues. We almost lost her again in September of 2012 when she had a seizure and was unresponsive for three hours, but again she surprised everyone and came back out of it. Then, on October 21, 2012, Leslie lost her battle with mitochondrial disease at the age of 24.
Leslie never complained; she always had a smile on her face despite all of the vomiting and pain she was in. Leslie was also a very caring, loving, kindhearted young woman. She had a heart of gold. She was very smart and wanted to become a metabolic dietitian so that she could help children like her. She was so smart she could have become anything she wanted to. She would give you the shirt off her back or her last dollar. The night before she passed away, she gave a family at the Ronald McDonald House a substantial amount of money because they were struggling financially; that is the type of person Leslie was. She will be greatly missed.
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 people like Leslie win the battle against mitochondrial disease. Until then, please help her family and the UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Leslie Whitt-Williams Research Fund.
We need more research to find a cure.
We thank you for your love and support,
The Whitt-Williams Family