|
Mary Payton’s Miracle Foundation was formed in March of 2008 in honor of Mary Payton Vigil, a resident of Mandeville, Louisiana. Mary Payton is a beautiful 5 year old girl who was diagnosed at the end of January 2008 with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), sometimes referred to as Batten Disease (www.bdsra.org). It is a genetic metabolic disorder. This means her body lacks an enzyme responsible for breaking down the lipopigments in her cells. Over time, children affected by LINCL suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually children  become blind, bedridden and are unable to communicate. Unfortunately at present, it is always fatal. It usually ends in death between the ages of 8 and 12. This disorder is rare, affecting only about 200 children in the country. It is a recessive genetic disorder, meaning other siblings would have a 25% chance of also having the disorder.
Two years ago, Mary Payton began having seizures. The seizures were followed by frequent falls and trouble walking. She was misdiagnosed with epilepsy last year. After taking Mary Payton to see a neurologist in Ohio, she was then diagnosed with LINCL. She is now losing neurological function everyday. She has decreased in motor function and her eye sight is starting to decline. The current research in the U.S. has shown promise in halting the progression of the disease, but there is no approved treatment available in the U.S. Once the function is lost, it cannot be regained. We are racing against time. It is essential that we get Mary Payton the help she needs as soon as we possibly can.
We know it is hard to choose who to donate to. So many people are in need. We are pleading with you to consider helping us. If enough people come together, we can make a difference for this child and others.
Thank you for visiting our site!
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 rotavirus. 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.
Mary Payton currently attends a preschool early intervention program in the public school system where she receives speech therapy, occupational therapy, physical therapy, and adapted PE classes. These therapies will keep her mentally and physically stimulated and help her retain her skills. Although she is doing fairly well now, no one knows when she may start to decline. It is important to get treatment as soon as possible before she starts losing crucial skills and before her vision starts to noticeably decline.
Site Visits
6887
|
Home