Mary Payton's Story

“Mary Payton” Olivia Vigil entered the world on May 28, 2003 as a beautiful, healthy baby. She lived a normal toddler life, talking early, and hitting all of her developmental milestones at the appropriate time. She was an extremely healthy little girl who never even went to the doctor for a sick visit until after she turned two. She was a clumsy kid, but everyone just assumed she was clumsy like her mother. One day right before her third birthday, Mary Payton was riding home with her mother and little sister after school when she became unresponsive. Her head turned to the side, and she slumped over in the car seat. This was followed by vomiting. She was carried by ambulance to the emergency room where she suffered another partial-complex seizure. Later that night she was admitted to Children’s Hospital in New Orleans where she was diagnosed with. Within 24 hours, she had a routine EEG that was normal, so the doctors assumed the seizures were related to the virus. Two weeks later, Mary Payton suffered a similar seizure and was started on an anti-seizure medication. The summer of 2006 was uneventful, but the seizures started again in August. Around Christmas, Mary Payton began falling a bit, almost as if her knees were giving out from under her. Another seizure medication was also added around that time, and mild ambulation and fine-motor problems began. For months her neurologist adjusted medication dosages, assuming the motor problems were medication related, but the problems did not stop or improve. Continuous EEG monitoring revealed tiny misfires (seizures) throughout the brain occurring quite frequently. Given the lack of seizure control, another opinion was sought from an epilepsy specialist (epileptologist) at the Cleveland Clinic in Ohio in January 2008 where the probable diagnosis of LINCL was first considered. This diagnosis was confirmed in February 2008 by specialized blood work and DNA testing performed back in New Orleans.  

Our beautiful Mary Payton Olivia Vigil lost her battle with Battens Disease on February 25, 2015. She was 12 years old.  

Mary Payton lived with her family in Mandeville, Louisiana, a town right north of Lake Pontchartrain and New Orleans. Her father, Joe, works for the Department of Veterans Affairs as a psychologist, and her mother, Nikki, works as a credit analyst for Whitney Bank. Her sister, Maison, is 9 years her junior and does not have Batten's Disease, but was diagnosed with Type 1 Juvenile Diabetes in July of 2013, on her mom's birthday.

Mary Payton’s father is a native of Mandeville, Louisiana, where he graduated from Mandeville High School (class of 1991). He received his Bachelor’s Degree at the University of Mississippi (Ole Miss), where he was a member of Chi Psi fraternity. He completed his graduate work at the University of Southern Mississippi and the University of Memphis. 

Her mother, Nikki, is a native of Hendersonville, Tennessee, where she graduated from Hendersonville High School (class of 1992). She also attended Ole Miss, where she was a member of Zeta Tau Alpha sorority. It is at Ole Miss where her parents met.

Mary Payton’s maternal grandparents are Doug and Bettye Hale of Hendersonville, Tennessee. Doug and Bettye were high school sweethearts at North Nashville High School, graduating in the class of 1957. Bettye is a retired banker who also worked for the Sumner County Register of Deeds. Doug is also retired, but worked in industrial sales for companies in the Nashville area. They are members of First United Methodist Church in Hendersonville.

Her paternal grandfather is a former Christian Brother and long-time teacher (48 years to be exact!). His name is Orlando Vigil, but some of his former students may know him as Brother Ambrose, Brother Joseph, or Brother Ambrose Joseph. He taught at many different schools, but he is well-known for his time at St. Paul’s School in Covington, LA, De La Salle High School in New Orleans, Christian Brothers School in the City Park of New Orleans, and Jesuit High School of New Orleans. The last 22 years were spent serving the St. Tammany Public Schools at Mandeville Junior High School.

Her paternal grandmother is also a retired teacher of 36 years. Her name is Pat Vigil. Interestingly, she is a former School Sister of Notre Dame, meaning that she was a nun. While in the convent, she was known as Sister Mary Deborah or Sister Deborah. As a nun, she primarily served a teaching role, teaching at various schools around the south and Midwest. Locally, she is known for her years of service in the parochial schools, namely St. Paul’s School in Covington, LA and Jesuit High School in New Orleans.

Her paternal grandparents met while they were still in their respective religious orders, but after falling in love, they wrote to Rome to be relieved of their simple vows to receive the higher Sacrament of Marriage.