ROC Stop Seizures- Raising Epilepsy Awareness
Donation protected
As a background, my husband, Ryan (ROC), was diagnosed with Epilepsy as an adult in 2011. He has been through everything and back to put an end to his seizures. I knew Ryan when he was diagnosed but did not start dating him or get married to him until several years after his diagnosis. After we got married, we learned so much more about how Epilepsy can impact a person’s life. Every day our marriage only gets stronger as we deal with seizures, medication side effects, loss of Ryan’s driving privileges, searching for a possible cure, medical expenses, and having to explain to our toddler why we can’t go certain places or why daddy is sick. We continue to fight Ryan’s epilepsy as a family.
Ryan has tried every possible medication for his Epilepsy. However, his body does has not tolerated any of them well. From anger issues, to hallucinations, to GI issues, and more, and yet the seizures continued. He has also tried alternative treatments and diets to no avail. The last option was brain surgery.
On June 15, 2020, Ryan entered the hospital for a stereo EEG. The study required two brain surgeries to insert probes into Ryan’s brain in order to determine where exactly in his brain his seizures started. The brain surgery is at a minimum a two part surgery. By the third week of Ryan’s hospital stay, the doctors determined that Ryan has generalized epilepsy with focal epilepsy traits making his epilepsy a complex case. A few years ago they would have sent Ryan home saying there was nothing they could do. There are implants but they are for people with complete focal epilepsy. Ryan’s doctors, however, took the chance by doing a third brain surgery. During this surgery, Ryan received a NeuroPace RNS implant with the electrodes placed through the thalamus in Ryan’s brain. Ryan was the second person in the state to have thalamic surgery like this. Ryan is home now and recovering well but it will be months to a year before we can tell if the implant is helping. I the meantime, we continue to find a cure, raise awareness, and raise funds not only for Ryan and our family but for others who are also going through these struggles.
Consequently, we are raising money for the following:
Medical bills - $6,500 minimum (deductible amount)
Lost Wages - $7,000 for three months (difference between paychecks he would be receiving and amount covered by short term disability).
Medication - $260/month
Housing and utilities - $1500/month
Food and supplements - $400/month
Transportation - $50/month
Non-Profit Set Up and Start Up - $2000 COBRA for one month health insurance -$600 Please help Ryan and our family as we go through this time of potential seizures, financial struggle, and to reach our goal to be able to help others at the same time through Epilepsy awareness.
Ryan has tried every possible medication for his Epilepsy. However, his body does has not tolerated any of them well. From anger issues, to hallucinations, to GI issues, and more, and yet the seizures continued. He has also tried alternative treatments and diets to no avail. The last option was brain surgery.
On June 15, 2020, Ryan entered the hospital for a stereo EEG. The study required two brain surgeries to insert probes into Ryan’s brain in order to determine where exactly in his brain his seizures started. The brain surgery is at a minimum a two part surgery. By the third week of Ryan’s hospital stay, the doctors determined that Ryan has generalized epilepsy with focal epilepsy traits making his epilepsy a complex case. A few years ago they would have sent Ryan home saying there was nothing they could do. There are implants but they are for people with complete focal epilepsy. Ryan’s doctors, however, took the chance by doing a third brain surgery. During this surgery, Ryan received a NeuroPace RNS implant with the electrodes placed through the thalamus in Ryan’s brain. Ryan was the second person in the state to have thalamic surgery like this. Ryan is home now and recovering well but it will be months to a year before we can tell if the implant is helping. I the meantime, we continue to find a cure, raise awareness, and raise funds not only for Ryan and our family but for others who are also going through these struggles.
Consequently, we are raising money for the following:
Medical bills - $6,500 minimum (deductible amount)
Lost Wages - $7,000 for three months (difference between paychecks he would be receiving and amount covered by short term disability).
Medication - $260/month
Housing and utilities - $1500/month
Food and supplements - $400/month
Transportation - $50/month
Non-Profit Set Up and Start Up - $2000 COBRA for one month health insurance -$600 Please help Ryan and our family as we go through this time of potential seizures, financial struggle, and to reach our goal to be able to help others at the same time through Epilepsy awareness.
Organizer
Marissa O'Connor
Organizer
Longwood, FL
