Connecting With Those Who Understand

​     A casual observer might see the group recently gathered around a table at the Grain Valley Price Chopper cafeteria as just a typical group of friends meeting up for lunch. The laughter and teasing was plentiful, and phones were passed around to giggle about a funny meme. But, this group of friends is proudly atypical, and their connection comes from understanding what most people cannot see or understand.
     Connecting with those who understand is at the heart of much of the work for the Purple Peace Foundation.
     The Purple Peace Foundation, a 501c3 nonprofit organization, was started in March 2012 in memory of Amanda Brady, a Grain Valley resident who died at age 13 following complications from epilepsy. Amanda’s parents, Mark and Holly Brady, founded the organization in an effort to raise awareness about epilepsy and provide support to those living with epilepsy.
     Shannon Walter-Colledge and her children Cole and Cayla were able to travel to Disneyland last November for Epilepsy Awareness Day thanks to the support of the Purple Peace Foundation. For three days, the family was able to experience an expo of over 3,000 attendees to attend workshops, gather resources, and connect with others who also deal with epilepsy. The family also enjoyed two days at Disneyland as a part of the trip.
     Cole, a recent graduate of Raymore-Peculiar High School, was diagnosed with epilepsy at age 8.
     “When you have epilepsy, you feel secluded from life. People look at you differently. I feel different than everyone else, and I sometimes wonder, ‘What did I do to deserve this’,” Cole said.
     Cole was encouraged by the trip and is continually encouraged by the friends he has made participating with the Purple Peace Foundation.
     “They make me comfortable. I don’t have to explain myself or worry about people looking at me or not understanding my condition.”
     Cole’s sister Cayla found comfort in the Disneyland trip and in participating in Purple Peace Foundation activities.
     “It was an eye opener to go to Disneyland and see how many people there are that are affected by epilepsy. It makes you feel less alone, knowing that there are others who understand what you are going through,” Cayla said.
     “When your family has epilepsy, you often feel like there is no one else who understands.”
     Stacey Perry, a dedicated volunteer to the Foundation who also has epilepsy, was struck by Cayla’s statement that the “family has epilepsy”.  
     “That is so profound,” Perry said. “I always say that I have the seizures, but my family has epilepsy. She nailed it when she said that,” Perry.
     Perry’s family has also attended the Epilepsy Awareness Day events at Disneyland and explains that it is so much more than just a fun day at an amusement park.
     “It’s seminars, and resources, and 3,000 people walking around in purple shirts who you know understand what you are going through. From my husband’s standpoint, there are other husbands there who are taking care of their wives. Husbands who understand what it means to be both a husband and a caregiver,” Perry said.
     “We struggled for years to find a group of people who we could relate to. This group has been a lifesaver for me. As a single mom, I tried to not put any responsibility or burden on Cayla. Finally, I have people who I can relate to and reach out to,” Walter-Colledge said.
     Taylar Spire, a recent graduate of Blue Springs South High School, was diagnosed with epilepsy last July. Spire had a seizure while driving and her car ended up in a ditch. She was diagnosed not long after the accident.
     Taylar’s father, Steve Spire, recalls the phone call after her accident.
     “That was a horrible call,” Spire said.
     Taylar can no longer drive due to her diagnosis, which puts a strain on her parents to coordinate travel to school and activities.
     “Taylar was in the color guard, and getting her to all of her practices and back and forth from school was a challenge. We’ve depended a lot on family and friends to help with that,” Spire said.
     “I’m used to being the one that helps fix everyone’s problems, but now I’m the one that has to ask for help. It can be tough,” Taylar said.
     The Spires connected with the Purple Peace Foundation after attending the organization’s car show fundraiser last August and attend activities to make connections with families in similar situations. 
     Through informal get togethers and more formal “Connections” support groups, the Foundation aims to create opportunities for families like the Spires to connect with others in similar situations.
    “We’ve been able to provide monitors for people and help people access resources like Epilepsy Awareness Day, but getting these groups started has been one of the most beneficial things that our foundation has been able to do,” Holly Brady said.  
     The organization raises funds in order to provide tools which may improve the quality of life for someone living with epilepsy, to support epilepsy research, and to increase awareness and education about epilepsy.
     The Foundation hosts a number of fundraising events annually to support programming, including the Cruise for Consciousness Car Show for Epilepsy Awareness on August 4th at the Grain Valley Community Center Pavilion and a bowling tournament scheduled for November 17th at Lunar Bowl.
     The Foundation will once again sponsor a family to go to Epilepsy Awareness Day at Disneyland this year. Applications will be available next week and will be due the first week of August.
     For more information on the Purple Peace Foundation, visit 
www.purplepeacefoundation.org.
 

Families impacted by epilepsy gathered recently for lunch at the Grain Valley Price Chopper. The Purple Peace Foundation, a local nonprofit dedicated to raising funds to provide tools for those with epilepsy and supportive programs for families impacted by the condition, coordinates a number of formal and informal gatherings as a part of their work.
Photo credit: Valley News staff
 

Left to right: Steve Spire, Taylar Spire, and Holly Brady enjoy a light hearted moment over lunch with friends from the Purple Peace Foundation. Brady started the organization with her husband Mark after losing their daughter Amanda in 2011 due to complications from epilepsy.
Photo credit: Valley News staff