Fund James’ Fight
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At 28 weeks in utereo, we learned that James had an intraventricular bleed in his brain – essentially causing a stroke. For the next difficult 11 weeks, I was put on bedrest and endured weekly ultrasounds, tests and MRI’s. We had to hire a nanny to care for our other three children, which exhausted all of our savings. We worried about what the outcome would be with James, test after test, doctor after doctor. We were not given a great deal of hope. There was one doctor, however, who was the exception to the rule. He encouraged us to realize that miracles do happen and how miraculous of an organ the brain is.
James was born May 13, 2008 along with his twin brother, Sam. James and Sam also have 3 older siblings, who at the time were 5, 3, and 2. The twins were born at 39 weeks and we were blessed with two beautiful, big and healthy boys….except for the condition in James’s brain. After weekly head measuremsents we new that it was only a matter of time before the surgery was the only option. At 4 months old, James was showing signs of pain and funtional fialure, his hydrocephalus had developed to the point where a ventricular shunt needed to be placed in his brain in order to save his life as well create further brain damage. The shunt would help him stay alive by relieving the spinal fluid pressure that had built up in his brain.
The next 14 months were beautifully typical. James and his twin, Sam, grew and developed at relatively the same pace. However, when James was 18 months old, his shunt failed a few days before Christmas. He was admitted and had a brain operation to correct his shunt (shunt revision). It was then that his neurosurgeon informed us that she was not comfortable with the outcome of the surgery but we were released to go home cautiously. James would have his second shunt revision the day after Christmas, a more successful one then the first.
In January 2010 , James was readmitted to the hospital for what we thought was another shunt failure. At this time we discovered that he had developed seizures – most likely caused from the trauma caused by the back to back revisions of the shunt. After several years of dealing with seizures that lasted up to an hour, in 2012 James was finally diagnosed with Focal Staus Epilepticus. At that time the doctors were not only able to locate where the seizures were coming from they also discovered that James was not a candidate for the life changing epilepsy surgery. After numerous trial and error episodes with different medications, we finally found a medication that helps control the amount and length of his seizures, however, the side effects enhance his ADHD, compulsivity and Oppositional Defiant Disorder.
James’s diagnosis include: Obstructive Hydrocephalus, Generalized Muscle Weakness, Epilepsy, ADHD, Oppositional Defiant Disorder, Hypotonia, Social Communication Disorder (Pragmatic), and Cerebral Palsy–Hemiplegia. As a result, he takes a lot of medications and needs a great deal of additional services, care and attention. Through it all though, James has touched so many people’s lives. He has a contagious laugh and has the gift to engage people into his world. Although he has moments with explosive episodes and uncontrolled emotions, the amazingly charming, loving and funny part of him always prevails.
This road hasn’t been easy for us or the rest of our family. We’ve experienced job loss, bankruptcy, stressful pile up of medical bills that we now find ourselves asking for help. I am unable to go back to work full-time because of all the therapies, school emergencies with James and my other four children and their schedules. My husband has great job at the bank with flexibilty and a small but stable paycheck. I have been working at my church and cleaning houses to try to help ends meet, but yet we are still unable to make any headway with our bills and house repairs and are beginning to get worried for our future and are now in danger of loosing our house. As it stands, if we do find a way to keep our house we still have house repairs to make for the city, house security improvements for James’s safety, medical bills that continue to come and a car to accomodate the entire family which is reliable enough to get James’s to his doctor and therapy appointments as well as the rest of the family to where they need to be This is a great deal of money and what wears us down and keeps us up at night….as does the fear that James may not be around in the morning.
Please consider offering a service/time or a financial contribution to our family. Please help us stay in our house, lift some of our burdens, make us a safe home and help us continue to fill our house with love and happiness. Friends who can comment in any way…please do! Thank you for reading my story. To learn more and see updates on James' progress, please visit www.fundjamesfight.com.
James was born May 13, 2008 along with his twin brother, Sam. James and Sam also have 3 older siblings, who at the time were 5, 3, and 2. The twins were born at 39 weeks and we were blessed with two beautiful, big and healthy boys….except for the condition in James’s brain. After weekly head measuremsents we new that it was only a matter of time before the surgery was the only option. At 4 months old, James was showing signs of pain and funtional fialure, his hydrocephalus had developed to the point where a ventricular shunt needed to be placed in his brain in order to save his life as well create further brain damage. The shunt would help him stay alive by relieving the spinal fluid pressure that had built up in his brain.
The next 14 months were beautifully typical. James and his twin, Sam, grew and developed at relatively the same pace. However, when James was 18 months old, his shunt failed a few days before Christmas. He was admitted and had a brain operation to correct his shunt (shunt revision). It was then that his neurosurgeon informed us that she was not comfortable with the outcome of the surgery but we were released to go home cautiously. James would have his second shunt revision the day after Christmas, a more successful one then the first.
In January 2010 , James was readmitted to the hospital for what we thought was another shunt failure. At this time we discovered that he had developed seizures – most likely caused from the trauma caused by the back to back revisions of the shunt. After several years of dealing with seizures that lasted up to an hour, in 2012 James was finally diagnosed with Focal Staus Epilepticus. At that time the doctors were not only able to locate where the seizures were coming from they also discovered that James was not a candidate for the life changing epilepsy surgery. After numerous trial and error episodes with different medications, we finally found a medication that helps control the amount and length of his seizures, however, the side effects enhance his ADHD, compulsivity and Oppositional Defiant Disorder.
James’s diagnosis include: Obstructive Hydrocephalus, Generalized Muscle Weakness, Epilepsy, ADHD, Oppositional Defiant Disorder, Hypotonia, Social Communication Disorder (Pragmatic), and Cerebral Palsy–Hemiplegia. As a result, he takes a lot of medications and needs a great deal of additional services, care and attention. Through it all though, James has touched so many people’s lives. He has a contagious laugh and has the gift to engage people into his world. Although he has moments with explosive episodes and uncontrolled emotions, the amazingly charming, loving and funny part of him always prevails.
This road hasn’t been easy for us or the rest of our family. We’ve experienced job loss, bankruptcy, stressful pile up of medical bills that we now find ourselves asking for help. I am unable to go back to work full-time because of all the therapies, school emergencies with James and my other four children and their schedules. My husband has great job at the bank with flexibilty and a small but stable paycheck. I have been working at my church and cleaning houses to try to help ends meet, but yet we are still unable to make any headway with our bills and house repairs and are beginning to get worried for our future and are now in danger of loosing our house. As it stands, if we do find a way to keep our house we still have house repairs to make for the city, house security improvements for James’s safety, medical bills that continue to come and a car to accomodate the entire family which is reliable enough to get James’s to his doctor and therapy appointments as well as the rest of the family to where they need to be This is a great deal of money and what wears us down and keeps us up at night….as does the fear that James may not be around in the morning.
Please consider offering a service/time or a financial contribution to our family. Please help us stay in our house, lift some of our burdens, make us a safe home and help us continue to fill our house with love and happiness. Friends who can comment in any way…please do! Thank you for reading my story. To learn more and see updates on James' progress, please visit www.fundjamesfight.com.
Organizer
Shannon Smoot
Organizer
Lakewood, OH
