They planned it last year to possibly be a one-time event that would raise some money, but more importantly raise raise awareness of Epilepsy, a condition that affects more than three million people in this country. But due to the success in raising money and knowledge on the condition, eight mothers who have children suffering from Epilepsy for a second series of events this Saturday.
To join their events, you can go to their Facebook page, http://www.facebook.com/events/226772774069660/ or go to register at http://purpleday2012.kintera.org/faf/home/default.asp?ievent=999920
"It went better than we could have dreamed," said Shondra Crapp, one of the mothers who organized last year's event. Despite having a modest goal of $5,000 in 2011, the group raised more than $20,000 with a walk and casino night, which was matched by a donor, leading to approximately $42,000 raised.
Kerin Colson, Kelly Hanke, Nicole McLean, Dawn Riley, Sue McLean, Judy Mumm, Rachel Ramonette and Crapp came together to share their stories about the affects of epilepsy has had on their children last year.
Epilepsy, in its simplest definition, is a condition when a person has two or more unprovoked seizures, which affect a variety of mental and physical functions. Seizures can very greatly, from severe grand mal – which results in unconsciousness and spasms – which people typically think of when talking about epilepsy, to ones that are not noticeable and can often look like to an outside observer as daydreaming or a catatonic state.
Little research has been done on epilepsy compared to other illnesses and conditions, which means less is known about. For example, Sue pointed to the fact that four times as much money is spent for every person diagnosed with Parkinson’s Disease, as opposed to epilepsy. According to the Citizens United for Research in Epilepsy, more people suffer from epilepsy than died from breast cancer this past year.
What is known is that the condition often shows itself in children, as 50 percent of cases begin before the age of 25. Often times, epilepsy is believed to be caused by something causing damage to a child’s nervous system, causing interference with the normal electrical charges in the nerves. In two-thirds of all epilepsy cases, a cause is never determined. Some of the more severe seizures cause brain damage, as well as stop breathing to the point that there could be death. Also, sometimes, seizures do slow down development in children, putting some with severe versions of the condition behind their peers.
Each of the mothers talked about the first time they saw their children dealing with a seizure and the fear that their children may die. It is a fear that does not dissipate over time as some of the mothers have had to see their children intibaited or drugged during an outburst of seizures. Medflights to larger hospitals are not unusual. They talked about how sometimes they can go months without any sight of a seizure, to then seeing dozens in a day. Black eyes, head wounds, and other injuries caused by a seizure are common. The randomness of the seizures, and the possibility of fatality means they go through many sleepless nights wondering when the next seizure will strike.
All of that drove the mothers to work hard on last year's fundraisers. The mothers wanted to make sure the funds that were raised were going to the right places. They worked with the Southwest Wisconsin Epilepsy Foundation to target the funds between research and giving better medications to pediatric patients who suffer more severe episodes.
This year, the group is targeting funds to target research and assistance for those families who have children suffering from Lennox-Gastaut Syndrome, a difficult-to-treat form of childhood-onset Epilepsy that most often appears between the second and sixth year of life. It is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems.
"If we can find hope for them, then maybe we can find a cure for everyone," Crapp said.
Crapp noted that the Epilepsy Foundation was surprised at last year's turnout. For example, an Epilepsy Walk in Janesville saw 100 walkers, whereas the Lancaster walk saw 400.
"I said small towns pitch in," Crapp recalled. "We're overwhelmed about the support this community has given us."
Crapp noted that her son wants to keep pushing awareness so that it is recognized on a national stage. "Someday I want a sport to 'go purple," Shondra relayed from her son, Darren, who wanted to see a major sport where purple - the color of Epilepsy awareness - the same way they embrace pink for breast cancer awareness.
One of the things Crapp wants to get across is that those suffering from seizures need help. She recalled being at a restaurant last year where an elderly woman was suffering a seizure, and a number of the people around her froze, not knowing what to do. "I know its terrifying to see, but don't be afraid to help someone who is having a seizure," Crapp said, recalling going to support the woman as she went through the episode, holding her, and asking if she was ok and if she had epilepsy. The woman was ok and Crapp hoped that others would jump to help those suffering through a seizure.
As to whether this will be a regular annual event or not, Crapp said that after the weekend, the mothers will decide what they will do next, not wanting to wear out volunteers or sponsors.
Things kick off at 8 a.m. Saturday with the start of registration for the run-walk. Runners will begin at 9 a.m., and take a path from the square to Winskill and back. Walkers will be walking a similar route.
In the evening, starting at 7p.m., the casino night begins at St. Clement's Banquet Hall. Crapp said that items for the auction are bigger than last year, and they have added more Black Jack tables to fill the demand.