A Life-Changing Diagnosis and a New Path Forward
Dr. Jessica Lee’s baby daughter, Rosemary, was diagnosed with a rare form of epilepsy at the age of just 4 months. After trying a few different medications to control the seizures and not seeing results, Dr. Lee was desperate to help her child. When Rosemary was 8 months old, a visit with a dietitian at the Medical University of South Carolina changed everything.
Discovering the Power of the Ketogenic Diet
Laura Dority, a ketogenic dietitian, recommended that Rosemary tame her seizures by adhering to a strict ketogenic diet. For Dr. Lee and her husband, that meant a drastic lifestyle change. They suddenly found themselves weighing their daughter’s food to the precise gram because any deviation could cause a seizure. It also meant firmly monitoring sugars and fats since a medical ketogenic diet is low in carbs, high in fat and moderate in protein.
Rosemary’s seizures disappeared within weeks after starting the diet, and now, at 11 years old, she remains seizure-free and has resumed a traditional diet.
The Founding of the Keto Hope Foundation
The success of the ketogenic diet amazed Dr. Lee and inspired her to start the Keto Hope Foundation, along with Dority, to help families of children with pediatric epilepsy find a viable alternative treatment option.
Understanding Pediatric Epilepsy and Drug-Resistant Cases
Dr. Lee shared the following information: “Epilepsy is a chronic brain disorder characterized by recurrent seizures, and it is estimated that 50 million to 70 million people worldwide suffer from this disease. While classic treatment options such as medication and surgery are often beneficial, as many as 30% of patients with epilepsy do not find relief and are considered drug resistant. The ketogenic diet has been used for drug-resistant epilepsy since the 1920s and should be considered for these patients. A high-fat diet with enough protein for growth and development and carbohydrate restriction triggers a shift in brain metabolism toward using ketone bodies for energy. This change can dramatically reduce seizure frequency in over 50% of patients and leads to nearly complete seizure control in 20% to 30% of patients.”
Building a Supportive Community for Families and Dietitians
Education is certainly a very important aspect of the Keto Hope Foundation, but Dr. Lee said the inspiration for the organization was to connect families interested in the diet as a treatment option for their children. The organization is also a networking source for dietitians all over the United States and offers continuing medical education credit through educational offerings.
Dr. Lee added: “We yearned for a community and to meet people going through what we were going through. Who else has to bring a scale and measure food at a restaurant? We had to be super strict about babysitters because if the timing of feeding was off, she could have a seizure. We wanted to meet people who could relate to that. We envisioned the Keto Hope Foundation as a place for parents to find support and share stories. We also wanted a place for ketogenic dietitians to continue their education. We are learning so much every day about how to use the diet in specific scenarios, such as continuing to breastfeed while using ketogenic diet therapy.”
Growing Impact Across South Carolina and Beyond
The Keto Hope Foundation, launched in 2015, has supported hundreds of families all over the United States, many of them in South Carolina. Dr. Lee said families find the organization through internet searches, word of mouth and social media.
The Foundation participates in epilepsy-related events throughout the year and is run by a six-person board consisting of Dority as the board chair, Dr. Lee and her husband, a pediatric neurologist and two more ketogenic dietitians. A mom of a child with epilepsy serves as a part-time staff member for the organization.
Based in Charleston, the Keto Hope Foundation partners with South Carolina Advocates for Epilepsy in events such as Stroll for Seizure Control. Its representatives attend conferences throughout the United States, and the organization holds educational webinars for families and dietitians seeking additional information.
Fundraising for the Future of Keto Hope Foundation
On March 8, the Keto Hope Foundation held its first fundraising event, Party with a Purpose. Dr. Lee said the organization exceeded its goal, raising more than $30,000, which will help it expand on current initiatives and invest in new projects in 2025.
For more information on the Keto Hope Foundation, visit ketohope.org.
By Theresa Stratford
