One in 26. That’s the number of people who will develop epilepsy in their lifetime. Each November, Cook Children’s Comprehensive Epilepsy Program creates original T-shirt designs to raise epilepsy awareness. This year’s theme is “Lights, camera, take action!”

Megan was the “one.” She was born in 1997. Her mom, Mary Overfield, had a healthy full-term pregnancy. However, shortly after birth, Megan began experiencing infantile spasms and was later diagnosed with a rare form of epilepsy, Lennox-Gastaut Syndrome (LGS), at 4 years old. At 16, genetic testing revealed that Megan also had a rare genetic anomaly known as PURA Syndrome.

“Megan was included in the first genetic study of this particular anomaly at Baylor College of Medicine in 2014 which became identified as PURA syndrome,” Mary said.

Sadly, Megan passed away earlier this year at the age of 26. Despite her struggles with LGS and other medical complexities, Mary said Megan was a bright light in her life – as well as the lives of her husband, Dane, and their older daughter, Emily.

“She always showed the strongest spirit,” Mary said, “Megan taught all three of us many important life lessons without ever saying a word.”

While Megan never received care at Cook Children’s, her family had a special bond with Cook through the annual epilepsy awareness T-shirt campaign. This year’s design celebrates that connection and Megan’s story.

Parenting a child with special health care needs

Being a specialized caregiver around the clock can be very isolating and take a toll on one’s health. Mary said she joined Twitter (now X) shortly after its launch when Megan’s health care team recommended social media as a way to connect with other families facing similar challenges.

“I found a great deal of support on Twitter, connecting with foundations, epileptologists, medical professionals and other families like ours,” Mary said. “I started feeling less isolated in my parenting journey. Our family connected with the LGS Foundation and found Executive Director Tracy Dixon-Salazar, among others there, to be an amazing source of helpful information, understanding and support.”

Discovering Cook Children’s and raising epilepsy awareness

Mary and Emily have been raising epilepsy awareness for many years. They came across M. Scott Perry, M.D., a pediatric epileptologist and head of Neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, on social media. Dr. Perry's annual T-shirt fundraiser each fall raises epilepsy awareness and support for Cook Children’s Comprehensive Epilepsy Program. 

“We purchased Dr. Perry’s first epilepsy awareness T-shirts years ago and every fall we eagerly await to learn the unique themes and designs for his annual T-shirt fundraiser with Cook Children’s,” Mary said.

International LGS Awareness Day

November is National Epilepsy Awareness Month and November 1^st is International LGS Awareness Day and Illuminate for LGS Awareness. Mary and her family illuminate their home with purple lights all month to educate and raise awareness for epilepsy and LGS.

“Megan always had purple string lights hung above her bed for the month of November and we have purple outdoor lights as well as our LGS awareness yard sign for the whole month,” Mary said. “Emily wears—and Megan also wore—the annual T-shirts designed by Dr. Perry and the LGS Foundation. Emily has always been a fierce advocate for her sister, including her in as much of life as possible and continues raising awareness for rare epilepsies.”

Mary and her family live in Rochester, New York, and she said the city also lights up for LGS in purple and green lights on November 1.

“We feel it is important to raise awareness as the experts work towards a cure for rare epilepsies,” Mary said.

LGS clinical studies

With Megan experiencing LGS and PURA syndrome, she has contributed to a handful of clinical studies.  

“Megan participated in multiple clinical trials for new antiseizure medications (ASMs) over the years as we feel both research and seizure cessation are integral to ending rare epilepsies,” Mary said.

At Cook Children's, Cynthia Keator, M.D., Medical Director of Neurology at the Justin Institute, was recently awarded an Endowed Chair from the W.I. Cook Foundation for her proposal to establish a Lennox-Gastaut Syndrome Center of Excellence.

Through this clinical program, Dr. Keator aims to create a natural history study to better define the course of epilepsy and other non-seizure symptoms of LGS. She’s also working with the Pediatric Epilepsy Research Consortium (PERC) to develop a national consensus on LGS treatment and care. The goal is to bring attention to health care decisions and co-existing conditions, or comorbidities, not targeted by current therapies in LGS as well as support needs for preventative intervention to develop new guidelines, treatments and protocols.

Advice for other families

Reaching out to organizations like the LGS Foundation and staying educated can help families feel connected and understood in their own journeys. Mary also encourages families to take life one day at a time and to enjoy the “infrequent, but happy moments when they occur.”

“Megan enjoyed numbers and counting, reading books, playing her chimes and many other simple joys in life,” Mary said. “She always reminded us to enjoy the little things, especially when she was powering through a particularly hard seizure day. Dane and I agree that we would all be very different people had Megan not been born into our lives.”

Remembering Megan

Mary and her family feel fortunate that they had 26 more years with Megan than they were promised when she was born.

“Although her time on earth was short in quantity, we tried our best to ensure it was long in quality,” Mary said.

Mary believes her family is fortunate they met so many amazing people throughout Megan’s life including gaining “extended family members” for whom they care deeply.

“If it weren’t for Megan, we would not have crossed paths with amazing humans like Dr. Perry and many others in the rare epilepsy realm. For that gift from Megan alone, we are especially grateful.”

Connect with Mary

To connect with others who have experience living with LGS in their families, consider following Mary on X (Twitter) and Instagram.

Support Cook Children's Epilepsy Awareness

To purchase a Cook Children’s 2024 epilepsy awareness T-shirt, please visit Under the Peaks retail shop at Cook Children’s Medical Center - Fort Worth, or call 682-885-7325. If you live outside of the area, you may order your T-shirt online here: https://www.customink.com/fundraising/1in26-2024

A panel convened by the FDA voted 13-0 that the agency should approve the drug as treatment of these two rare forms of epilepsy. The FDA will make a final decision to approve the medicine by June 27.

Cook Children’s participated in several of GW Pharmaceutical’s clinical trials of Epidiolex used to treat children over the age of 2 with Lennox Gastaut and Dravet and continues to enroll children in a trial of the drug for treatment of seizures in Tuberous Sclerosis Syndrome. “The trials were the largest of their kind in the world and have provided the gold-standard evidence needed to prove cannabidiol can be effective as a treatment for epilepsy,” said M. Scott Perry MD, Medical Director of Neurology and principle investigator for the trials performed at Cook Children’s.

The FDA gave the drug a favorable review, stating that it provides “substantial evidence” of the drug’s effectiveness in treating Lennox-Gastaut syndrome and Dravet syndrome.

“Although the review is still ongoing, the risk-benefit profile established by the data in the application appears to support approval of cannabidiol for the treatment of seizures associated with LGS [Lennox-Gastaut syndrome] and DS [Dravet syndrome]," the FDA said in a report.

Dr. Perry explains that Epidiolex is an essentially pure CBD substance produced under strict standards to ensure the drug is the same with every batch. Once approved, the drug would be obtained from a pharmacy, prescribed by a doctor and more likely to be covered by insurance.

“My hope is this will be the first of many drugs derived from the cannabis plant,” Dr. Perry said. “This drug has gone through a rigorous process to be approved and I think it will help people feel safe taking the medication. I hope it also encourages more research into what the hundreds of other substances in the cannabis plant can do for patients.”

Previously On This Topic:

• 9 Facts about Cannabidiol (CBD) Oil and the Texas Compassionate Use Act
• Texas legalizes non-euphoric cannabdiol for seizures in epileptic patients
• Drug in Cook Children's epilepsy trial shows positive results in separate trial
• Success in CBD study: Cook Children's researchers play a vital role
• Cannabis oil trial ongoing at Cook Children's
• Study: Cannabis Oil Can Dramatically Decrease Epileptic Seizures