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( For a more detailed account of Olivia's story, medical history and information, and letters from the family, please visit www.loveforlivi.com )
Olivia Kate is my niece. She is a 14 year-old who loves socializing, challenges, and is as sassy as we all could be in our young teens. However, like all of us, Olivia has had to endure her share of trials. The most recent of which has turned our family's lives upside-down.
Olivia was diagnosed with Epilepsy at age 12, after her mother found her unresponsive in the kitchen while the family prepared for a horse show in 2015. Initially seen by Dr. Melissa Jones (a neurologist) in Houston, Texas, Livi was given the diagnosis of Juvenile Myoclonic Epilepsy. This news was devastating. Over the past two years, after trying treatment after treatment, Livi has had to be removed from school. Her mother, Lori, had to leave her job in order to be home for her daughter in case of an emergency related to the frequent and potentially dangerous seizures she experiences. None of the medications have had an impact on the frequency of her seizures, frustratingly enough.
It has been a long road--one during which diagnoses have changed as more and more tests pile up. Dr. Gretchen Von Allmen in Houston, Texas, recently gave an alternative opinion on Olivia's original diagnosis of JME... She believes Olivia may, in fact, have a different form of epilepsy.
Due to Olivia's tachycardia during seizures, she is at risk for SUDEP (Sudden Unexpected Death in Epilepsy), so it's imperative that they stop the seizures. This is a VERY time sensitive series of events as Livi is at serious risk of death so long as she experiences the seizures.
In order to ensure the correct diagnosis, Livi will have to undergo further testing--expensive tests that the family cannot afford on their own, especially with her mother having to stay home to care for her. There is genetic testing required, a specialized MRI to identify if there is a malformation on Olivia's frontal lobe, a MEG test, removal of her braces for her safety during testing, and an extended hospital stay for 7 days for observation of her seizures (during which time all of her medications will be stopped). After these procedures, Dr. Von Allmen will recommend the proper route via surgery to best treat Olivia with.
Anything you can give will obviously help tremendously with the medical expenses incurred. Not only will it help offset the cost of the procedures and testing, but it will help the family with travel expenses associated with being at the hospital in Houston so frequently. If you are unable to give, a simple share of this page or the website (www.loveforlivi.com ) will go a long way.
Should you have an idea for a fundraiser, please contact me, Elissa Hanc, via this page. I am open to assisting in hosting events, planning them, or providing more information if necessary. Thank you all so very much for considering helping Olivia.
Olivia Kate is my niece. She is a 14 year-old who loves socializing, challenges, and is as sassy as we all could be in our young teens. However, like all of us, Olivia has had to endure her share of trials. The most recent of which has turned our family's lives upside-down.
Olivia was diagnosed with Epilepsy at age 12, after her mother found her unresponsive in the kitchen while the family prepared for a horse show in 2015. Initially seen by Dr. Melissa Jones (a neurologist) in Houston, Texas, Livi was given the diagnosis of Juvenile Myoclonic Epilepsy. This news was devastating. Over the past two years, after trying treatment after treatment, Livi has had to be removed from school. Her mother, Lori, had to leave her job in order to be home for her daughter in case of an emergency related to the frequent and potentially dangerous seizures she experiences. None of the medications have had an impact on the frequency of her seizures, frustratingly enough.
It has been a long road--one during which diagnoses have changed as more and more tests pile up. Dr. Gretchen Von Allmen in Houston, Texas, recently gave an alternative opinion on Olivia's original diagnosis of JME... She believes Olivia may, in fact, have a different form of epilepsy.
Due to Olivia's tachycardia during seizures, she is at risk for SUDEP (Sudden Unexpected Death in Epilepsy), so it's imperative that they stop the seizures. This is a VERY time sensitive series of events as Livi is at serious risk of death so long as she experiences the seizures.
In order to ensure the correct diagnosis, Livi will have to undergo further testing--expensive tests that the family cannot afford on their own, especially with her mother having to stay home to care for her. There is genetic testing required, a specialized MRI to identify if there is a malformation on Olivia's frontal lobe, a MEG test, removal of her braces for her safety during testing, and an extended hospital stay for 7 days for observation of her seizures (during which time all of her medications will be stopped). After these procedures, Dr. Von Allmen will recommend the proper route via surgery to best treat Olivia with.
Anything you can give will obviously help tremendously with the medical expenses incurred. Not only will it help offset the cost of the procedures and testing, but it will help the family with travel expenses associated with being at the hospital in Houston so frequently. If you are unable to give, a simple share of this page or the website (www.loveforlivi.com ) will go a long way.
Should you have an idea for a fundraiser, please contact me, Elissa Hanc, via this page. I am open to assisting in hosting events, planning them, or providing more information if necessary. Thank you all so very much for considering helping Olivia.
Organizer and beneficiary
Sunny Hanc
Beneficiary