On July 11, Shannon and Joe Bursick will gather with friends and family to celebrate the life of their daughter, Emma, who died a year ago at the age of 7.

Emma died of Sudden Unexplained Death in Epilepsy, or SUDEP, an aspect of epilepsy the Bursicks never knew about until their daughter's death.

"We found out that anyone with epilepsy can die from SUDEP, but many people with epilepsy don't even know about it," Mrs. Bursick said.

She is the driving force behind the fundraiser for research into SUDEP and to raise awareness about epilepsy.

"We are calling it Fair Play because we wanted to do something that would have made Emma happy. She loved to hear children laugh and to play. We designed it around having things that would make children laugh," Mrs. Bursick said.

Emma was 6 months old when she had what her mother described as "unexplained, strange movements." Emma was tested for seizures and diagnosed with epilepsy.

"She was in the midst of a seizure when they tested her. She spent 14 days in the hospital," Mrs. Bursick said.

Two months later, Mrs. Bursick, a school counselor, left her job to take care of her daughter. "At that point, it looked like we were going to need a full-time nurse to care for Emma."

Over the next few years, the Bursicks worked with doctors to stabilize Emma's condition, trying different medications and services such as occupational and physical therapy. "We wanted to make her life as simple and happy as possible. Of course, we would have loved for it to have been seizure-free, but that was never possible. The longest period of time that she went without a seizure was 11 months," her mother said.

Eventually, Emma would average one seizure a week. "That is where she stayed for the rest of her life," she said.

Due to Emma's illness, the Bursicks had taken many safety precautions, including placing a video monitor in her bedroom.

"She had nocturnal seizures," Mrs. Bursick said, but the family didn't know about the phenomenon of Sudden Unexplained Death in Epilepsy until Emma died during the night of July 14, 2008.

"I would have slept with her had I known. Not that I could have prevented her death, but maybe I would have answers that Joe and I will never have," Mrs. Bursick said.

After the Bursicks learned about the complication, they made it their mission to tell other families of loved ones with epilepsy about it. "A lot of doctors don't talk about it," Mrs. Bursick said.

In January, the Bursicks established the Emma Bursick Memorial Fund at the Epilepsy Foundation of Western/Central Pennsylvania to help promote awareness and to raise money for research.

"I serve on the task force to increase awareness in Pennsylvania. The task force is headed by Dr. Deborah Holder and we had out first meeting on May 5," Mrs. Bursick said.

The family wanted to something else to honor Emma's life.

"A lot of people told us to do something around the anniversary of her death. When we decided to do a fundraiser, we wanted to do something that reflects Emma's life. We thought it would be a little carnival and it turned into so much more," she said.

So much more that they received title sponsorship from Highmark Blue Cross Blue Shield.

"One of Highmark's key areas of focus is children's health," Mrs. Bursick said, "and they felt Fair Play was a valuable community event aligned with their giving. We are so grateful for their involvement."

The Bursicks have received help in other ways.

"My partner in this public awareness initiative is my mom, Jan Boyd. She left her job to help me carry out this mission ... in Emma's honor and memory. It is such a blessing to be working side by side with my mom and Emma's grandma," she said. The Bursicks have two other children, Emma's twin brother, Avery, and 2-year-old Adelyn. Neither have epilepsy.

The Bursicks live in Indiana Township and have received support from the community.

Mr. Bursick is a teacher and wrestling coach at Hampton High School, and he has received support from fellow teachers, students and the Hampton school community, including many of the members of the wrestling team.

"We have been overwhelmed with support," Mrs. Bursick said. "It is a wonderful way to honor Emma's life."

Fair Play will be held from 3 to 8 p.m. July 11 at Emmerling Park in Indiana Township. Activities will include inflatable play areas, a trackless train, games, arts and crafts, music, a silent auction and an opportunity to soak local teachers and coaches in a Power Shower, and more.

Tickets are $5 per person. Children 2 and younger will be admitted free. Proceeds will support the Emma Bursick Memorial Fund. For more information, visit www.fairplay-event.org.