Have you ever wondered how it would feel to not be able to afford a medication that ensures your child’s life is not at risk? I don’t have to wonder, I know! My name is Holly Horath and I am here to tell you about the daily fight my family and I are in to save my daughter’s life! Cheyenne is 14 years old and was originally diagnosed with Benign Rolonic Epilepsy at the age of 5. In 2009, Cheyenne’s seizures began to change. She began having Grand-mal and Catatonic seizures. The number and severity of seizures not only increased but became life threatening. Because of this, we had to start using Diastat, a rescue medication that is administered through the rectum, to stop the really bad seizures. Can you imagine how helpless it is to watch as your child turns blue from having trouble breathing during a seizure, not knowing if she will come out of it and what brain additional brain damage it can cause? We continued to add so many other seizure medications. However, no matter what drugs were added, or how often the doctors tweaked the dosages, my daughter continued to have uncontrolled seizures. In 2010, Cheyenne began having at last one seizure a day on a good day. I had no choice but to home school her because of the frequent seizures, and every time she had a ‘MAJOR” seizure, we would have to go back to day one with her learning her letters and numbers. She would be so frustrated because she knew that she should know the materials we were working on, but she just could not recall them. In July, 2010, Cheyenne had a Vagal Nerve Stimulator (VNS), a device like a heart pace maker but for the brain surgically implanted in the cavity of her chest, to assist with the seizure control. Although the VNS greatly assisted in her learning and allowed her to make strides in this area, as far as the seizure control, it offered limited results. On August 10, 2011 Cheyenne had 3 major seizures in 7 hours, then the very next day she suffered 4 more major seizures. This is when the doctors detected an irregular heart arrhythmia that lasted between 48 and 72 hours. In addition, Cheyenne started having what is known as “Todd’s Paralysis” after the major seizures. This affected her in different ways, sometimes her face would be paralyzed and sometimes her extremities would be affected after her seizures, which has lasted up to several days and she has had to be hospitalized for. After 2 ambulance rides in 48 hours not to mention the numerous hospital stays, my husband and I had seen her suffer enough, and we started looking further than our local health care system for possible answers. The doctors at Vanderbilt Children’s Hospital were at a loss. Even though they were truly diligent about working to find the best treatments to control her seizures, they basically told me that at that time they really did not know what else to do for her. We were scared that we were going to lose our daughter. In November 2011, Cheyenne met Dr. Kothare, a pediatric epilepsy specialist at Children’s Hospital in Boston, MA. Dr. Kothare changed her diagnosis to refractory Benign Rolonic Epilepsy, and prescribed Ospolot, a drug used in Europe and Australia to treat epilepsy but is not FDA approved in the US. My daughter became seizure free on this miracle drug! We were totally amazed how quickly this drug worked to control her debilitating and life threatening seizures! Not only that, but she had no significant side effects from this drug. Unfortunately, I had to leave my job due to some unforeseen health issues and, thus, lost the ability to pay for Ospolot for 14 days. During this time, Cheyenne was on all her other previous medications. Five days into the 14 days, Cheyenne started having major daily seizures again. We then did anything we could to raise the money to re-secure the Ospolot for her use. After a few days, we were once again seizure free. Let me say here, that we have tried all other available epileptic drugs, and NONE of them provided the seizure control that the Ospolot provides for Cheyenne! This drug has not only controlled Cheyenne’s seizures, it also gave my daughter and my family some sort of a “normal” life. At 14, Cheyenne is now able to go to the store with us or on an outing for a day and not worry if she would in all likelihood in the course of that day, have a seizure. Today, she is able to play organized sports, be with friends and be involved in the chorus program at her school. It has also given her confidence that even though she still has epilepsy, she has the potential to pursue her dreams of art and music. However, without this medicine, those dreams to out the window! The main issue here is we are not just paying a copay. OSPOLOT IS NOT FDA APPROVED, despite the fact that it has been being used in Europe for over 30 years successfully in the treatment of Epilepsy. Because it isn’t FDA APPROVED, there is a federal law stating that if an insurance carrier, be it private or public they are not bound under their coverage contract to pay for NON_FDA APPROVED drugs, and thus we have to pay 100% cost of this drug, which is $860.00 per month. I feel like it should be noted, that we have researched lower costs from alternate pharmacies, and in that even on her other meds due to her sensitivities, 99% of the time Cheyenne had to be on name brands and not generics of those medications. When we attempted to try these alternate pharmacies, Cheyenne has a severe reaction to what I call a “knockoff”. This is not just a financial plea, it is also a plea to ask you to HELP US PROTECT OUR DAUGHTER’S LIFE AND ALL SHE CAN BE. We leave it up to you. We would like to thank you for taking the time to read our story and hope that if you can’t donate to our cause, that you would share the Go fund me link, so that we can pass it on and maybe from your share, there will be someone who can assist us in our daily battle to not only keep our daughter alive, but also give her the quality of life this drug has provided her! Thank you again and God bless! Subscribe to Updates Show More DONATE TWEET SHARE
Have you ever wondered how it would feel to not be able to afford a medication that ensures your child’s life is not at risk? My name is Holly Horath and I am here to testify about the daily fight I am in to save my daughter’s life! Cheyenne is 14 years old and was diagnosed with Benign Rolandic Epilepsy at the age of 5. Can you imagine how helpless it is to watch as your child turns blue from having trouble breathing during a seizure, not knowing if she will come out of it and what brain damage it can cause? After 2 ambulance rides in 48 hours not to mention the numerous hospital stays, my husband and I had seen her suffer enough, and we started looking further than our local health care system for possible answers. Dr. Kothare changed her diagnosis to refractory benign Rolandic Epilepsy, and prescribed Ospolot, a drug used in Europe and Australia to treat epilepsy but is not FDA approved in the US. From November 2011 until today, my husband and I gladly paid $860 each month for this medication. Thankfully, we were able to receive financial support from the Shannon Foundation and the Epilepsy Foundation of Kentuckiana, organizations willing to support our daughter, however these organizations are not a permanent remedy. We are in the process of trying to change the circumstances that a federal law relevant to this situation that puts us and thousands of other people as well in a situation.
