Brent Battles Seizure Disorder
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This handsome devil is my amazing cousin, Brent. Brent is 29 years old, he’s young, vibrant and in the prime of his life. He’s a caring brother, a loving son, an incredible athlete and a shining beacon of light in the lives of those lucky enough to know him. He is the definition of strength and resilience and he truly is my hero.
Unfortunately Brent’s life has been dramatically altered by his intractable or “medically refractory” seizures – seizures that cannot be controlled by pharmaceutical medications. He has debilitating seizures every single day; sometimes having up to 10 seizures in a 24 hour period.
After years of being a decorated cyclist, triathlete and Ironman, Brent was forced to quit a lifestyle and sport that he truly loved and was incredibly gifted at because it was no longer safe for him to compete, or even safely ride a bike any longer. Being the tenacious person that he is, Brent doesn't let the seizures keep him from running, although it is not uncommon for him to fall. In fact, earlier this year, he fell while running in New York City and cracked his head open requiring numerous staples.
In 2012, after exhausting numerous medical treatments, naturopathic medications, dietary changes and supplements that all failed to give him relief from these debilitating seizures, he decided it was time to explore the daunting option of brain surgery. After months of testing at Johns Hopkins in Baltimore, MD, it was determined that Brent was a good candidate for a right Temporal Lobe Resection. The resection was performed in April of 2012, and was a two-stage operation. The first stage was exploratory, in which electrodes were placed directly on the brain to determine where the seizures were coming from – the focal points. After placing a grid of electrodes on the surface of the brain in the operating room, Brent was transferred to the monitoring center to intracranially monitor the seizures. Unfortunately, two days after the grid was attached to the surface of the brain, the grid slid and ruptured a vein, causing a life threatening hemorrhage. After a CT scan confirmed the hemorrhage, he was rushed into emergency surgery. His family did not know whether he would survive. Luckily, the neurosurgeon was able to stop the bleed, but unfortunately Brent suffered damage to the third cranial nerve which rendered his right eye unusable for 6 months while the nerve regenerated.
The second stage of the surgery, to actually remove the focal points, had to be aborted. This stage could not take place until his brain fully healed from the trauma the hemorrhage caused.
By October 2012, he was finally healed and ready to go back for the second stage of the operation to have his right temporal lobe resected. While this surgery went well initially, after a few days it became clear that he contracted an operating room generated infection. The neurosurgeon took Brent back into the O.R. to scrape the infection off the dura mater of the brain and remove the “bone flap” - a 6X6 inch square that was cut in his skull as the entrance to the brain. While cleaning the infection, the neurosurgeon determined that the bone flap was too infected to remain as part of his skull, meaning Brent would need a prosthetic bone flap. However, because of the seriousness of the infection and the likelihood that it could return, the prosthetic could not be reattached for nine months, and Brent had to live with a 6"x6" hole in his skull in the meantime.
In June of 2013, Brent went back to John’s Hopkins to have the prosthetic “flap” put in – his 5th brain surgery.
Once entirely healed from the five surgeries, Brent moved to New York City. Over the last several years, the seizures have gotten worse in both frequency and severity. As the seizures increased in severity, so did the dangers of living in New York City. In fact, he has fallen downstairs, fallen into the busy New York City streets in front of cars and buses, cracked his skull, shattered his elbow, and broken his wrist – all the result of having a seizure. While he is lucky to still be alive, the break in his elbow was so bad that he needed a plate and several screws, and months of rehab. By far the worst, though, was when he fell onto a New York City subway track earlier this year. While waiting on a train to arrive at the station, Brent had a severe seizure, fell off the busy platform, and landed 6 feet below on the subway track just minutes before the train arrived. Several police officers, MTA officials and kind commuters helped to pull him off the tracks.
Unfortunately, after several dangerous episodes, Brent had to make the hard decision to leave his independent life in NYC and move back home to Austin, TX to concentrate on his health. He has made the even harder decision to undergo his 6th brain surgery, scheduled to happen this December 2016. This surgery is a desperate and last ditch effort to rid himself of the burden of these horrible seizures in the hopes that he may achieve better quality of life.
Brent’s father died in 2009 and is not here to help provide financial support through this difficult time. His mother is doing the best she can, but with the cost of the upcoming surgery and the expenses of the previous surgeries, money is tight. Brent has been through more trauma, pain and suffering these past several years than anyone should endure in a life time and yet he continues to love life, persevere, and bring so much joy to all of those around him. It is absolutely heartbreaking and beyond comprehension for someone like myself to understand what he endures on a daily basis.
Any help you can provide is so very appreciated. Thank you.
If you would like to receive updates as Brent's journey continues to unfold, please hit "subscribe to updates" right above the donations list and you will get notifications whenever new information is posted!
Unfortunately Brent’s life has been dramatically altered by his intractable or “medically refractory” seizures – seizures that cannot be controlled by pharmaceutical medications. He has debilitating seizures every single day; sometimes having up to 10 seizures in a 24 hour period.
After years of being a decorated cyclist, triathlete and Ironman, Brent was forced to quit a lifestyle and sport that he truly loved and was incredibly gifted at because it was no longer safe for him to compete, or even safely ride a bike any longer. Being the tenacious person that he is, Brent doesn't let the seizures keep him from running, although it is not uncommon for him to fall. In fact, earlier this year, he fell while running in New York City and cracked his head open requiring numerous staples.
In 2012, after exhausting numerous medical treatments, naturopathic medications, dietary changes and supplements that all failed to give him relief from these debilitating seizures, he decided it was time to explore the daunting option of brain surgery. After months of testing at Johns Hopkins in Baltimore, MD, it was determined that Brent was a good candidate for a right Temporal Lobe Resection. The resection was performed in April of 2012, and was a two-stage operation. The first stage was exploratory, in which electrodes were placed directly on the brain to determine where the seizures were coming from – the focal points. After placing a grid of electrodes on the surface of the brain in the operating room, Brent was transferred to the monitoring center to intracranially monitor the seizures. Unfortunately, two days after the grid was attached to the surface of the brain, the grid slid and ruptured a vein, causing a life threatening hemorrhage. After a CT scan confirmed the hemorrhage, he was rushed into emergency surgery. His family did not know whether he would survive. Luckily, the neurosurgeon was able to stop the bleed, but unfortunately Brent suffered damage to the third cranial nerve which rendered his right eye unusable for 6 months while the nerve regenerated.
The second stage of the surgery, to actually remove the focal points, had to be aborted. This stage could not take place until his brain fully healed from the trauma the hemorrhage caused.
By October 2012, he was finally healed and ready to go back for the second stage of the operation to have his right temporal lobe resected. While this surgery went well initially, after a few days it became clear that he contracted an operating room generated infection. The neurosurgeon took Brent back into the O.R. to scrape the infection off the dura mater of the brain and remove the “bone flap” - a 6X6 inch square that was cut in his skull as the entrance to the brain. While cleaning the infection, the neurosurgeon determined that the bone flap was too infected to remain as part of his skull, meaning Brent would need a prosthetic bone flap. However, because of the seriousness of the infection and the likelihood that it could return, the prosthetic could not be reattached for nine months, and Brent had to live with a 6"x6" hole in his skull in the meantime.
In June of 2013, Brent went back to John’s Hopkins to have the prosthetic “flap” put in – his 5th brain surgery.
Once entirely healed from the five surgeries, Brent moved to New York City. Over the last several years, the seizures have gotten worse in both frequency and severity. As the seizures increased in severity, so did the dangers of living in New York City. In fact, he has fallen downstairs, fallen into the busy New York City streets in front of cars and buses, cracked his skull, shattered his elbow, and broken his wrist – all the result of having a seizure. While he is lucky to still be alive, the break in his elbow was so bad that he needed a plate and several screws, and months of rehab. By far the worst, though, was when he fell onto a New York City subway track earlier this year. While waiting on a train to arrive at the station, Brent had a severe seizure, fell off the busy platform, and landed 6 feet below on the subway track just minutes before the train arrived. Several police officers, MTA officials and kind commuters helped to pull him off the tracks.
Unfortunately, after several dangerous episodes, Brent had to make the hard decision to leave his independent life in NYC and move back home to Austin, TX to concentrate on his health. He has made the even harder decision to undergo his 6th brain surgery, scheduled to happen this December 2016. This surgery is a desperate and last ditch effort to rid himself of the burden of these horrible seizures in the hopes that he may achieve better quality of life.
Brent’s father died in 2009 and is not here to help provide financial support through this difficult time. His mother is doing the best she can, but with the cost of the upcoming surgery and the expenses of the previous surgeries, money is tight. Brent has been through more trauma, pain and suffering these past several years than anyone should endure in a life time and yet he continues to love life, persevere, and bring so much joy to all of those around him. It is absolutely heartbreaking and beyond comprehension for someone like myself to understand what he endures on a daily basis.
Any help you can provide is so very appreciated. Thank you.
If you would like to receive updates as Brent's journey continues to unfold, please hit "subscribe to updates" right above the donations list and you will get notifications whenever new information is posted!
Organizer and beneficiary
Allison Newton
Organizer
Wilsonville, OR
Brent Neill
Beneficiary
