On Saturday, April 22, 2017, five members of Team Ride to Give participated in Ironman Texas on behalf 16-year-old Katie Pivonka. They are:
Edward Calvano 459 * Scott Haley 2475
Bill Halstead 425 * Jason McCaffrey 479
David Nazaroff 566
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16-year-old Katie Pivonka is the daughter of John and Jamie Pivonka of Bedias, TX. From birth, Jamie knew something was "off" with her daughter. Every doctor they saw said Jamie simply imagined things and that Katie was fine. Then, at six months old, Katie suffered her first visible seizure. The Pivonkas were sent to a neurologist in Dallas who misdiagnosed Katie for over a year. On Fathers Day 2002, Katie had her first tonic clonic or "grand mal" seizure. She was hospitalized at Texas Children's, and after extensive testing, Katie was finally diagnosed with Lennox-Gastaut Syndrome.
Lennox-Gastaut Syndrome or LGS is a type of epilepsy with multiple different types of seizures, particularly tonic (stiffening) and atonic (drop) seizures. Intellectual development is usually, but not always, impaired. The cause of the disorder is unknown in 1 out of 4 children and accounts for only 2 to 5% of childhood epilepsies. Children with this type of epilepsy are well-known to both the pediatric and adult neurologist because their seizures are hard to control and they will need life-long treatment. The intellectual and behavioral problems add to the complexity of this syndrome and the difficulties in managing life with LGS.
Katie also has many additional medical diagnoses including Cerebral Heterotopia, Intermittent Exotropia, global developmental delays, Dysautonomia, Static Encephalopathy, Autism, Eosinophilic Esophagitis (EOE), as well as severe food and medicine allergies. Despite all she's be through, Katie is a bright shining light of love. Her strength and ability to bravely face all her health challenges, including her relentless seizures, amaze her parents daily.
Katie currently has a beloved service dog from 4 Paws for Ability in Xenia, Ohio but due to unforeseeable medical issues, he will be forced into early retirement at the age of 8. Kyto has saved Katie's life multiple times by pre-alerting before she has a seizure, alerting when she starts to have a seizure, and by helping to bring her out of seizures. Without Kyto, Katie would not be alive today. 4 Paws has a commitment to excellence and specializes in 3 man teams. This means Katie's parents command the dog since she is unable to control him herself, but he knows he ultimately "works" for Katie. Because of this training style, the Pivonkas are continuing to work with 4 Paws. As part of her receiving a new service dog, Katie's family has raised $8,500 in 4.5 months of hard work and through the loving generosity of dear friends and family. They have now begun raising funds to travel to Ohio from Texas for the mandatory training. The trip will cost upwards of $8000, and as a single income household, Katie's parents aren't able to pay this amount themselves.
This is where Ride to Give steps in to help Katie get closer to her goal of traveling to Ohio for a new epilepsy alert dog. Please support our "Ironman Texas Flash Fundraiser" for Katie by making a tax-deductible donation to Ride to Give.
For updates, please join Katie's Facebook Group, "Katie's Service Dog."
Contributions are solicited with the understanding that the donee organization (Ride to Give, 501c3 tax ID 46-2952297) has complete discretion and control over the use of all donated funds. Questions about how your donation is used can be answered by clicking here. Please visit Ride to Give on the web at www.ridetogive.com or on Facebook at www.facebook.com/ridetogive.
