Why We Crash- The Story of Malayna
Joe Kopf, Eldorado, hails from an Oakfield family that has participated in the crash-bang excitement of demolition derbies for 30 years. So it seemed fitting that Joe and his wife, Abby (Becker), would plan a demolition derby as a way to raise funds for research into a rare genetic disorder called Tuberous Sclerosis (TS). The disorder affects their daughter, Malayna, who will be four years old on Oct. 18.
With delayed physical and mental functions, Malayna, after two brain surgeries, has progressed to the level of a two-year old. Their little girl has not escaped the ravages of the disorder which can cause tumors in the brain, heart and other organs, seizures and mental deficiencies. TS affects one in 6,000 live births, and there is no cure. While the prognosis is less than favorable for their daughter, the Kopfs say they are determined to raise funds for research in the hopes Malayna will have a chance to beat the odds.
Joe, Abby and 50 family members are busy making last-minute preparations for the third annual Crashin' for the Cause, a demolition derby set for Saturday, Sept. 23, at a site north of Rosendale.
Crashin' for the Cause will be held at the intersection of Hwy. 26 and Olden Road on the grounds of the Pickett Steam Engine Club. Demolition action begins at noon. Food and refreshments will be served throughout the day and night, with DJ music by Record Entertainment from 7 to 11 p.m. A rain date is set for the next day, if needed.
"We both come from large families," Abby said. "So there are a lot of family volunteers and favorite family recipes on the menu. The tomatoes on the nacho supremes are right out of my Grandma and Papa Becker's garden. The public is invited for a fun day."
The Kopfs point out that none of the funds raised go to them personally. "We don't take any of the money ourselves," Abby said, noting that instead it goes to research in hope of finding a cure.
"This is a way for Joe and I to help make the public aware of the disorder and the need for research. In the long run, it will help our daughter and others who suffer from it."
Joe first got the idea to plan a Crashin' for the Cause demolition derby fund-raiser two years ago - at the time of Malayna's second birthday. Near her third birthday in the fall of 2005 he planned the second Crashin' for the Cause. The two events have generated $25,000 which the Kopfs donated to Tuberous Sclerosis research.
Coming up with the idea for the unique fund-raiser was easy for Joe whose father, Don Kopf, of Oakfield, has been involved in demolition derbies since 1972. "Demo derbies are in our family, and I also have uncles and cousins involved," said Joe. "When Malayna is older, I hope she'll realize how much we care and that we've held these events to help improve her life and the lives of all who suffer from Tuberous Sclerosis."
Malayna was diagnosed with Tuberous Sclerosis at Children's Hospital in Milwaukee when she was just one month old. Born with a heart murmur that was detected at birth, her local pediatrician suspected more was wrong. Testing revealed tumors in Malayna's heart. Further testing showed multiple tubers or hard calcified spots in her brain and confirmed the TS diagnosis.
"We have been told that Malayna has a lot of brain involvement in comparison to other people with Tuberous Sclerosis." said Abby. "She has suffered from seizures since she was four months old. We tried and failed five different seizure medications in a matter of a year. Each would stop her seizures for a little while, but then a new seizure would start up, with as many as 30 or 40 seizures occurring daily."
Malayna withstood two difficult brains surgeries in her young life in an attempt to eliminate or lessen the seizures. A grueling three-hour long seizure known as a Status seizure occurred when Malayna was just 14 months old.
"It was the deciding factor in allowing brain surgery to take place," Abby says. "During that seizure, we called an ambulance, and on the way to the hospital she stopped breathing. It was the worst day of my life. At that moment, I knew we had to do the surgery to give her the best chance at seizure control."
Since Malayna's brain surgeries, there has been a large decrease in her seizures.
"Now it's more like staring spells," Abby said. "But recent testing shows she also has seizure activity multiple times a day that we don't notice."
The good news is that Malayna's development was enhanced following surgery, said Abby. "We have seen a lot of good things from Malayna since she began preschool in the early childhood program in the Rosendale-Brandon School District," Abby explained. "She continues to make progress -- she just does it at her own pace."
One of the hardest things for Abby and Joe is that there are no guarantees. Malayna is doing better now, but that doesn't mean she will continue to improve or escape further ravages of TS. Seizures could return in full force. Other organs such as her kidneys or lungs could come under future attack.
"It's a never ending game of what-ifs," Abby says. "It really makes you appreciate every good day."
Projections from medical experts are that Malayna will probably not progress beyond that of a five-year old mentality.
"Quite frankly, I don't think it's fair for any doctor to predict the future for a three-year-old," Abby said. "I truly believe that with the obstacles Malayna has already overcome, there are no limits to what she can do. She may never be what is considered normal, but we will never stop pushing her to reach her full potential. Abby is a sweet, funny, strong-willed little girl."
Many Thanks to the Action Sunday and reporter Dorothy Bliskey for sharing this with us!
