By Sue Wambolt, Contributing Writer
Southborough – According to the Epilepsy Foundation, absence seizures are caused by abnormal activity in a person’s brain and are characterized by a short period of “blanking out” or staring into space. This type of seizure is most common in children ages 4 to 14.
When Andrew and Melanie Harmon noticed their 6-year-old daughter Emily “spacing out” for a few seconds several times a day, they assumed that she was just thinking about something because she would return to the conversation or activity as if nothing happened. In August 2013, an EEG confirmed that Emily was experiencing absence seizures.
Over the past year Emily has tried five different anti-epileptic drugs, none of which have stopped the seizures. The drugs are all strong and cause unwanted side effects such as fatigue and loss of appetite. Because of the seizures, Emily must be supervised at all times, especially while swimming or bathing, on stairs and in parking lots. Additionally, she needs to take a nap each day due to fatigue.
After suffering a grand mal seizure in May, coupled with the many failed drugs, Emily’s doctors recommended the Ketogenic Diet, which has proven to help children with refractory epilepsy – or epilepsy that does not respond to medication. It was at this time, as well, that Emily began seeing epileptologist Dr. Orrin Devinsky, director of the Epilepsy Division at NYU Langone Medical Center in New York City. According to Melanie Harmon, Devinsky has an excellent reputation for being progressive in treating children with refractory epilepsy.
In 1994 Devinsky founded FACES – Finding a Cure for Epilepsy and Seizures. FACES funds cutting-edge research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy. The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures, with the ultimate goal of finding a cure – a goal the Harmons share.
In an effort to spread epilepsy awareness and to raise funds for a cure, Woodward School second-grader Emily and her brothers Josh, 13, and Brett, 11, are spearheading the Putting for Purple fundraiser – purple is the color associated with epilepsy awareness.
“The kids are really the spirit behind this fundraiser,” Melanie said. “Josh designed the website. Emily helped design the flyer, chose raffle prizes and is spreading the word at school and around town. She has planned tattoo and face-painting stations and also asked older neighbor kids to help out. She even holds committee ‘meetings’ as often as she can to discuss the progress of our plans!”
The Putting for Purple fundraiser will take place at The Green Thumb, 185 Turnpike Road, Westborough, Sunday, Sept. 28, from 9 a.m.-3 p.m. It is open-house style, so golfers can stop by any time. There will be face painting, tattoo stations and a raffle. The Green Thumb also offers a playground, small petting zoo, pumpkins, ice cream and a gift shop. A $10 donation per person is suggested.
“When I first heard I had epilepsy I thought I was the only one,” Emily recalled. “I had heard about fundraising for cancer and diabetes, but never for epilepsy. So I am excited for people to help us raise money for people with seizures. And the mini-golf will just be fun!”
Planning and promoting the fundraiser as a family has given the Harmons a feeling of power over a disease that they cannot control.
“We are a close-knit family, and the diagnosis and reality has indeed been very stressful,” Melanie said. “We are trying to live one day at a time and we no longer take health for granted. The fundraising is really bringing us all together toward a common goal.”
Melanie will also be running in the NYC Marathon Nov. 2 to raise money for FACES.
“Whenever I do not feel like running,” she said, “I think of all of the things Emily does with such spirit and bravery, and I get myself moving.”
To learn more about FACES, visit http://faces.med.nyu.edu/about-us. For information about Putting for Purple, visit www.puttingforpurple.com or Melanie’s fundraising page, www.crowdrise.com/FACESNYC2014/fundraiser/melanieharmon1.