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Just after our son Eitan turned one, we discovered that he has a seizure disorder caused by Tuberous Sclerosis Complex (TSC). TSC, a rare genetic disease with no known cure, causes benign tumors to grow throughout organs in the body - primarily in the eyes, heart, kidneys, skin, lungs, and brain. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.
Now at age 11, with a trail of failed medications behind him, Eitan’s epilepsy is “intractable” or “drug-resistant,” meaning that medication alone will not bring him long term seizure control. After a new seizure type emerged this summer, causing a life-threatening status seizure, we began an extensive process with the neurosurgery team at Cincinnati Children’s Hospital to determine Eitan’s best path forward.
The process begins on October 29th with extensive testing for several weeks as world experts in TSC study and analyze how seizures work in Eitan’s brain to determine if he is a candidate for epilepsy surgery. This means that he will be in and out of the hospital in another state for the foreseeable future. It means that our family will be separated - with Leah and Eitan in Cincinnati and Mike at home in Carlisle with Eitan’s three siblings - as we try to maintain some semblance of normalcy for our other kids.
We know that folks want to help and support Eitan and we think this GoFundMe is the least complicated, most useful way to send a gift right now. While we have excellent medical insurance, there are many expenses associated with this journey that are not covered. Eitan's Special Needs Trust, The Eitan S. Levinstein Wholly Discretionary Trust, can be used to cover these costs, but we're concerned about exhausting the trust this early in his life. This GoFundMe is designed to add additional funds to the trust to be used for expenses such as transportation, lodging, food, a seizure detection watch, Lego sets to occupy his time between evaluations, and to support his potential recovery from surgery or surgeries.
In deep gratitude,
Mike and Leah
Now at age 11, with a trail of failed medications behind him, Eitan’s epilepsy is “intractable” or “drug-resistant,” meaning that medication alone will not bring him long term seizure control. After a new seizure type emerged this summer, causing a life-threatening status seizure, we began an extensive process with the neurosurgery team at Cincinnati Children’s Hospital to determine Eitan’s best path forward.
The process begins on October 29th with extensive testing for several weeks as world experts in TSC study and analyze how seizures work in Eitan’s brain to determine if he is a candidate for epilepsy surgery. This means that he will be in and out of the hospital in another state for the foreseeable future. It means that our family will be separated - with Leah and Eitan in Cincinnati and Mike at home in Carlisle with Eitan’s three siblings - as we try to maintain some semblance of normalcy for our other kids.
We know that folks want to help and support Eitan and we think this GoFundMe is the least complicated, most useful way to send a gift right now. While we have excellent medical insurance, there are many expenses associated with this journey that are not covered. Eitan's Special Needs Trust, The Eitan S. Levinstein Wholly Discretionary Trust, can be used to cover these costs, but we're concerned about exhausting the trust this early in his life. This GoFundMe is designed to add additional funds to the trust to be used for expenses such as transportation, lodging, food, a seizure detection watch, Lego sets to occupy his time between evaluations, and to support his potential recovery from surgery or surgeries.
In deep gratitude,
Mike and Leah