Meet Ryan:
For those of you who are familiar with Ryan, you will know how truly wonderful and giving he is as an individual. Always ensuring that friends and family know they are loved and appreciated. Always dropping what he is doing at any given moment if someone needs help. He enjoys singing, playing instruments, fishing, boating and spending time outdoors. For the most part, Ryan is just like every other ‘normal’ 31 year old male, however he has one special difference.
Since 2011, Ryan has been suffering from severe grand mal seizures (aka tonic-clonic seizures). In the beginning of this journey Ryan’s seizures were very different than they are now, while still being severe, they occurred less frequently. However, for the past 4 years Ryan’s seizures have become quite regular and aggressive. Every 22 to 30 days Ryan is expected to have up to 8 grand mal seizures, with weeks of complications following.
A peek into each epileptic cycle:
Early in the morning Ryan will experience his first seizure of the day, generally a petit mal. If he is fortunate, this will occur while he is still in bed, with a loved one in the house. If he does not happen to be having a fortunate day, it can catch him off guard; possibly in public, possibly alone, and possibly resulting in a variety of severe consequences. As the day progresses, Ryan will generally experience a seizure every hour or two, each one more aggressive than the last. On particularly bad days, Ryan’s seizures will start off severe and continue to worsen. At this point in time Ryan has not surpassed 10 grand mal seizure in one single day, and for that we are fortunate.
As you can imagine, this painful process is exhausting. During what we consider a ‘good bout’ it can take Ryan up to a week to recover: emotionally, physically, and mentally. After ‘bad bouts’ it takes much longer, with far more complications arising during the recovery process. In general, and even after a good bout, Ryan will suffer from many things such as: paralyzing anxiety, depression, invasive thoughts, insomnia, paranoia, severe muscle aches and pains, memory loss, and confusion.. just to name a few. By the time Ryan has fully recovered, at best in about one to two weeks… it is already time for another bout of seizures. Truly it is an endless and exhausting cycle.
At this point in time, this repetitive cycle has effected Ryan’s ability to maintain a reasonably normal and functional lifestyle. Considering the circumstances it is difficult and very dangerous for him to uphold a traditional job without the resources for constant supervision around the time of his expected seizures. Given this, Ryan does not have a steady nor adequate source of income. For the most part he has relied on loved ones, family, and friends for sustainability.
Doctors:
At this point in time, you may be wondering why Ryan hasn’t seen a neurologist to help him through this difficult situation. As a matter of fact, Ryan has seen 6 neurologists in the past 8 years, with countless visits to the Emergency Room. The general experience with these neurologists is that they will hear Ryan’s story, and either write the episodes off as pseudo-seizures, or straight up not believe him. Commonly the next action would be to prescribe a medication to control the ‘symptoms’. Unfortunately Ryan’s medication resistant epilepsy causes him to respond in a variety of negative ways. Throughout Ryan’s experience with the various neurologists there has never been any significant efforts towards finding a diagnosis. There has never been any conclusive test elicited, no CT scan, no PET scan, no MRI, and no EEG.
……..UNTIL NOW!
At the beginning of March, Ryan made an appointment with Mayo Clinic, in Jacksonville (they are so wonderful by the way). Ryan was provided with an appointment time only a week later.. we were quite shocked but very excited. Skipping ahead to after a 2 hour consultation with one of their Neurologists specializing in epilepsy, the doctor was fairly confident that he knew what was causing Ryan’s seizures. Ryan was placed into an MRI and EMU (epilepsy monitoring unit), both of which confirmed the doctor’s assumed diagnosis – without a doubt.
Diagnosis:
Ryan has officially been diagnosed with right sided mesial temporal sclerosis that is lesional, aka the culprit of his seizures all these years. The bad news: the Doc has told us that Ryan has less than a 5% chance of controlling his seizures with medication. This we sort of knew, since no medication has ever helped control his seizures for very long in the past.
The good news: We finally have a possible solution. Ryan will need to undergo brain surgery to remove the anomaly brain tissue in his right temporal lobe, with hopes of reducing or (if we are fortunate) completely resolving the seizures.
The reason we are here:
All of the medical bills Ryan has incurred up until this point have been paid for out of pocket, which have become costly. With brain surgery on the table, Ryan is now faced with a major medical situation and a large sum of money needed in order to see it through. We have been told the expected amount will be upwards of $50,000 or more, conservatively. While it is difficult and humbling to have to ask for help, we ask that you consider donating. Truly no amount of donation is too small, and is incredibly helpful. We appreciate and cherish anything that you may be able to give. How to help our cause:
1. Donate! Absolutely no amount is too small
2. Share this link on social media
3. Email this link to friends and family
#EpilepsyRelief4Ryan
For those of you who are familiar with Ryan, you will know how truly wonderful and giving he is as an individual. Always ensuring that friends and family know they are loved and appreciated. Always dropping what he is doing at any given moment if someone needs help. He enjoys singing, playing instruments, fishing, boating and spending time outdoors. For the most part, Ryan is just like every other ‘normal’ 31 year old male, however he has one special difference.
Since 2011, Ryan has been suffering from severe grand mal seizures (aka tonic-clonic seizures). In the beginning of this journey Ryan’s seizures were very different than they are now, while still being severe, they occurred less frequently. However, for the past 4 years Ryan’s seizures have become quite regular and aggressive. Every 22 to 30 days Ryan is expected to have up to 8 grand mal seizures, with weeks of complications following.
A peek into each epileptic cycle:
Early in the morning Ryan will experience his first seizure of the day, generally a petit mal. If he is fortunate, this will occur while he is still in bed, with a loved one in the house. If he does not happen to be having a fortunate day, it can catch him off guard; possibly in public, possibly alone, and possibly resulting in a variety of severe consequences. As the day progresses, Ryan will generally experience a seizure every hour or two, each one more aggressive than the last. On particularly bad days, Ryan’s seizures will start off severe and continue to worsen. At this point in time Ryan has not surpassed 10 grand mal seizure in one single day, and for that we are fortunate.
As you can imagine, this painful process is exhausting. During what we consider a ‘good bout’ it can take Ryan up to a week to recover: emotionally, physically, and mentally. After ‘bad bouts’ it takes much longer, with far more complications arising during the recovery process. In general, and even after a good bout, Ryan will suffer from many things such as: paralyzing anxiety, depression, invasive thoughts, insomnia, paranoia, severe muscle aches and pains, memory loss, and confusion.. just to name a few. By the time Ryan has fully recovered, at best in about one to two weeks… it is already time for another bout of seizures. Truly it is an endless and exhausting cycle.
At this point in time, this repetitive cycle has effected Ryan’s ability to maintain a reasonably normal and functional lifestyle. Considering the circumstances it is difficult and very dangerous for him to uphold a traditional job without the resources for constant supervision around the time of his expected seizures. Given this, Ryan does not have a steady nor adequate source of income. For the most part he has relied on loved ones, family, and friends for sustainability.
Doctors:
At this point in time, you may be wondering why Ryan hasn’t seen a neurologist to help him through this difficult situation. As a matter of fact, Ryan has seen 6 neurologists in the past 8 years, with countless visits to the Emergency Room. The general experience with these neurologists is that they will hear Ryan’s story, and either write the episodes off as pseudo-seizures, or straight up not believe him. Commonly the next action would be to prescribe a medication to control the ‘symptoms’. Unfortunately Ryan’s medication resistant epilepsy causes him to respond in a variety of negative ways. Throughout Ryan’s experience with the various neurologists there has never been any significant efforts towards finding a diagnosis. There has never been any conclusive test elicited, no CT scan, no PET scan, no MRI, and no EEG.
……..UNTIL NOW!
At the beginning of March, Ryan made an appointment with Mayo Clinic, in Jacksonville (they are so wonderful by the way). Ryan was provided with an appointment time only a week later.. we were quite shocked but very excited. Skipping ahead to after a 2 hour consultation with one of their Neurologists specializing in epilepsy, the doctor was fairly confident that he knew what was causing Ryan’s seizures. Ryan was placed into an MRI and EMU (epilepsy monitoring unit), both of which confirmed the doctor’s assumed diagnosis – without a doubt.
Diagnosis:
Ryan has officially been diagnosed with right sided mesial temporal sclerosis that is lesional, aka the culprit of his seizures all these years. The bad news: the Doc has told us that Ryan has less than a 5% chance of controlling his seizures with medication. This we sort of knew, since no medication has ever helped control his seizures for very long in the past.
The good news: We finally have a possible solution. Ryan will need to undergo brain surgery to remove the anomaly brain tissue in his right temporal lobe, with hopes of reducing or (if we are fortunate) completely resolving the seizures.
The reason we are here:
All of the medical bills Ryan has incurred up until this point have been paid for out of pocket, which have become costly. With brain surgery on the table, Ryan is now faced with a major medical situation and a large sum of money needed in order to see it through. We have been told the expected amount will be upwards of $50,000 or more, conservatively. While it is difficult and humbling to have to ask for help, we ask that you consider donating. Truly no amount of donation is too small, and is incredibly helpful. We appreciate and cherish anything that you may be able to give. How to help our cause:
1. Donate! Absolutely no amount is too small
2. Share this link on social media
3. Email this link to friends and family
#EpilepsyRelief4Ryan