Exceptional Patient Runs Against Pediatric Epilepsy

By raising funds for MassGeneral Hospital for Children’s Pediatric Epilepsy Program, Rosie Doherty is supporting the program that transformed her life.

MGHfCAt age 18, Rosie Doherty is a young woman of exceptional poise. In addition to being a public speaker and a marathon runner, she’s a community fundraiser for the MassGeneral Hospital for Children’s (MGHfC) Pediatric Epilepsy Program. What makes Rosie’s accomplishments even more remarkable is the fact that she has both autism and epilepsy.

Rosie and her parents, Terry and Michael Doherty, credit Elizabeth Thiele, MD, PhD, director of the MGHfC Pediatric Epilepsy Program, with transforming Rosie’s life. “She opened doors for me,” says Rosie, who has benefitted enormously from dietary therapy developed by Dr. Thiele and her colleagues.

Elizabeth Thiele, MD, PhD
Elizabeth Thiele, MD, PhD

When the family found their way to Dr. Thiele, Terry and Michael were distraught. Rosie’s future looked bleak. She was having hundreds of “absence” seizures every day and weekly grand mal seizures, the kind that causes the body to stiffen and then jerk uncontrollably.

The Power of Diet

About a third of children with autism spectrum disorder also have seizures, according to Dr. Thiele. Rosie is also in the unfortunate one-third whose epilepsy is intractable, meaning it doesn’t respond to the anticonvulsant medications currently available. Dr. Thiele specializes in helping such patients.

“Total wellness—healthy foods and exercise—is central to our approach for treating everyone with epilepsy,” Dr. Thiele says.

Rosie’s fortunes began to change after Dr. Thiele put her on the low glycemic index treatment (LGIT), which she and Mass General dietitian Heidi Pfeifer developed 14 years ago, and which is now used worldwide. The low-carbohydrate high-fat diet is a prime part of MGHfC epilepsy care for children and teens with intractable seizures. Research shows that it cuts in half or eliminates seizures in about 2/3 of the children on it. Rosie typically only eats 45 grams of carbs a day, 2 to 8 grams more if she runs that day. That means eating lean meats, fish without the bread crumbs, veggies and lots of healthy fats.

“Total wellness—healthy foods and exercise—is central to our approach for treating everyone with epilepsy,” Dr. Thiele says.

Rosie dedicated each of the marathon's 26.2 miles to other patients of Dr. Thiele.
Rosie dedicated each of the marathon’s 26.2 miles to other patients of Dr. Thiele.

“Rosie still has struggles but is she has such a positive attitude and doesn’t limit herself,” she adds. “She and her whole family are amazing and we are so proud of her.”

Indeed, after eight years on the diet, Rosie’s life has been transformed. She no longer has any absence seizures and the number of grand mal seizures she experiences has been greatly reduced.

Don’t Limit Your Dreams

Rosie, who graduated from Duxbury High School this year, rattles off a list of what she’s been able to do since being on the diet. “I ran cross country and did the daily announcements at school, I ride horses, play piano and sing, I acted in plays, and now I’m a public speaker,” she says. “I’ve proven everyone wrong who didn’t think I could do it.”

Together with her parents and sister Elizabeth, Rosie ran her first marathon in May, raising funds for the Pediatric Epilepsy Program. She wrote the names of 26 other Mass General patients on her arm and dedicated every mile of the marathon to one of them.

“Epilepsy is a difficult adversity, but I like to look on the bright side,” Rosie told the audience. “I believe it has made me a stronger person.”

Rosie has also become a popular fixture on the MGHfC epilepsy program’s Facebook page. When some of the MGH neurology residents began following the diet to raise awareness about its effectiveness, Rosie posted daily tips for them. She and her dad also produced and posted video clips during their marathon training, called the Ask Rosie Show.

Planning to go to Massasoit College in the fall and major in communications and theatre, Rosie is on a mission to help others. Speaking publicly now comes easily to her. She spoke from the heart at a Mass General pediatric epilepsy fundraiser last spring called Croquet for a Cure. There was laughter, tears and a standing ovation as she finished her nonscripted 2 1/2 minutes.

“Epilepsy is a difficult adversity, but I like to look on the bright side,” Rosie told the audience. “I believe it has made me a stronger person.”

Please contact us to learn more about how you can support MassGeneral Hospital for Children’s Pediatric Epilepsy Program.

Our website can also provide more information about how you can start an MGH community fundraising effort of your own.