Vivian Cotton was born at 27 weeks. Her sudden and traumatic birth injured her brain, resulting in hydrocephalus that required the surgical implantation of a shunt. By the time she went home, Vivian had undergone six surgeries and spent 144 days in the newborn intensive care unit. Tragically, her brain injury and shunt-treated hydrocephalus led to her developing epilepsy. Initially mild, her seizures increased significantly in length and intensity by the time she was 10 months old.
Michael and Lisa Cotton, Vivian’s parents, were committed to finding the right treatment for their daughter. They were tireless in their efforts to find a solution to her seizures, but no therapy or medication could control her seizures for any length of time. On top of that, Vivian experienced medication side effects such as lethargy and an inability to bottle-feed. The only therapy that seemed to help was when she was placed on a high-protein/low-carbohydrate ketogenic diet. But that success was short-lived as Vivian’s body was already fragile and the diet led to her developing pancreatitis and problems with her shunt, which required more surgery. Vivian’s seizures soon returned. After spending an additional three months intermittently in intensive care, Vivian passed away in 2015 at 18 months of age.
The Vivian L. Cotton Pediatric Epilepsy Patient and Family Support Fund
In the midst of their intense grief, the Cottons were motivated to honor Vivian’s memory by helping other families facing epilepsy, which affects nearly 1% of children under the age of 17. “It was clear to us through our difficulties navigating a complex health care system that families with fewer resources would find it much harder to understand what their family member needs.”
They established the Vivian L. Cotton Pediatric Epilepsy Patient and Family Support Fund, which supports a number of research and clinical areas across Michigan Medicine, encouraging innovative collaboration in the fight against epilepsy. The fund also helps families who are dealing with epilepsy; contributes to our ability to provide top-notch, comprehensive care; and enables us to offer hope to everyone that better epilepsy diagnostics, treatments, and preventatives will be possible in the future.
Neurological Research and Epilepsy
The Cotton family’s gift has made an impactful difference in the University of Michigan Department of Neurology as it supports the collaborative research of Lori Isom, Ph.D., the Maurice H. Seevers Collegiate Professor of Pharmacology, and Jack Parent, M.D., the William J. Herdman Professor of Neurology. The Isom and Parent laboratories bring together experts at all career stages to address epilepsy from multiple angles.
A major research focus is the SCN1B gene, which ensures proper functioning of heart muscles and neuronal tissues. Isha Verma, Ph.D., a postdoctoral research fellow in the Parent laboratory, studies SCN1B’s mutations, as a better understanding of them could inform our knowledge of epilepsy while leading to better interventions. SCN1B was first discovered by Dr. Isom and was found to be mutated in patients with inherited generalized epilepsy with febrile seizures. That same mutation has been seen in patients with inherited Dravet syndrome — a rare, drug-resistant form of epilepsy that begins in the first year of life in otherwise healthy infants.
The Parent and Isom labs are now working with epilepsy patients who have SCN1B gene variants to learn how the genes impact neurons in this population. Comparing the neurons of patients expressing SCN1B mutations to those of non-epilepsy patients will provide insight into the mechanisms of SCN1B as well as its effects on the brain. Translating their findings into ways to help patients is a top priority. Dr. Verma believes that better understanding SCN1B may be the key to significant therapeutic interventions.
Nnamdi Edokobi, a pharmacology graduate student in the Isom laboratory, studies how SCN1B epilepsy gene variants can cause irregular cardiac cell excitability. He is specifically interested in how disrupted connections between the brain and heart in SCN1B patients can lead to sudden unexpected death in epilepsy, or SUDEP. It is research that corresponds with previous work from the Isom and Parent laboratories that demonstrated iPSC heart cells, or models, made from patients with Dravet syndrome have abnormal excitability, suggesting that Dravet syndrome can include cardiac arrhythmias.
“These models have really helped us to understand how the brain develops at early stages and how these mutations affect brain development. The Cotton family has helped advance the techniques we use and allowed us to really further this understanding.”
—Jack Parent, M.D.
The teams in the labs also work with and advise pediatric neurologists worldwide on the need for cardiac workups and EEGs for patients with epilepsy. It is a protocol that is gaining steam, and Dr. Verma and Mr. Edokobi hope it will become standard practice for all patients with epilepsy to ensure their care is precise and comprehensive. Ultimately, they hope that the information they acquire about SUDEP and epilepsy will lead to helping alleviate the struggles families go through in navigating this disease.
The Cottons’ philanthropic investment impacts epilepsy in other far-reaching ways by providing support for education and fellowships, allowing recruitment of some of the brightest epilepsy trainees to our program. These talented individuals enable us to extend access to cutting-edge, patient-centered care while imparting new information to the field through their research efforts.
To learn more about how you can support epilepsy care, research, and education in the Department of Neurology, please contact:
Kirsten Petriches
Associate Director of Development, Neurosciences
Michigan Medicine Office of Development, University of Michigan
313-231-0230 | [email protected]
