Help young man find cure for ongoing seizures
Donation protected
Brian was born a typical child and achieved all developmental milestones. He was an honors student in both high school and college and had just gotten accepted into Cal Berkeley as a junior. He was going to be a history teacher. On June 16, 2016 Brian experienced his first seizure which led at first to a diagnosis of epilepsy. We noticed that Brian was unwell even between seizures with worsening symptoms. We were then told that he has a rare neurological disorder for which we have not found anyone else yet with the same condition.
Since his first seizure, Brian has developed a host of symptoms which prevent him from a life of independence. We are searching for an explanation for his rare neurological condition, which at this point is still under investigation by Stanford University and the Undiagnosed Disease Network and is causing progressive decline in his brain. As a family, we want to leave no stone unturned to find out what has happened.
The money will be used for whole genome genetic testing that is not covered by our insurance. The price for this test is around $15,000 dollars. Modifications for our home (as he has fallen many times), the exploration of new medical care and possibly even alternative medicine or therapies are other things the money will be used for. Currently, Brian wears a hat to prevent head injury when he falls from a seizure, but we would like to be able to provide him with options for protective head gear. With expanded resources we are hopeful that we can not only make Brian's environment safer, but can medically have more options so as to finally shed light on this terrible medical mystery.
It is a mystery that has led my son from being an independent, college student with a full rich life, to one of a dependent, child-like individual that is tormented round the clock by horrific symptoms and life threatening seizures. My son deserves a chance...Please help us in the urgent fight to save a very special young mans life...Thank you with all my heart for being part of giving Brian back his life!
Since his first seizure, Brian has developed a host of symptoms which prevent him from a life of independence. We are searching for an explanation for his rare neurological condition, which at this point is still under investigation by Stanford University and the Undiagnosed Disease Network and is causing progressive decline in his brain. As a family, we want to leave no stone unturned to find out what has happened.
The money will be used for whole genome genetic testing that is not covered by our insurance. The price for this test is around $15,000 dollars. Modifications for our home (as he has fallen many times), the exploration of new medical care and possibly even alternative medicine or therapies are other things the money will be used for. Currently, Brian wears a hat to prevent head injury when he falls from a seizure, but we would like to be able to provide him with options for protective head gear. With expanded resources we are hopeful that we can not only make Brian's environment safer, but can medically have more options so as to finally shed light on this terrible medical mystery.
It is a mystery that has led my son from being an independent, college student with a full rich life, to one of a dependent, child-like individual that is tormented round the clock by horrific symptoms and life threatening seizures. My son deserves a chance...Please help us in the urgent fight to save a very special young mans life...Thank you with all my heart for being part of giving Brian back his life!
Organizer
Sandra Strawn
Organizer
Weed, CA
