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Isaiah is my 12 year old son. He loves to fish and play video games! He is an amazing little boy, who just wants to live a normal life...
However he is going through, and has been through so very much. At 6 months old he was diagnosed with a rare seizure disorder, Infantile Spasms. The prognosis for this was devastating. Most children don't "get better" with the type of seizures he had. But miraculously, by the grace of God, he did. From the age of 1 year on he grew up like any normal little boy, no medications, and no more seizures.
Everything was fine until a few months after his 10th birthday. November 24, 2012 Isaiah laid down with me to take a nap in the middle of the day, which was odd. After being asleep about 15 minutes I felt him tossing and turning, or so I thought. I turned over to him having a seizure. Hospital visit, no answers, go home, another seizure as soon as he fell asleep. Another hospital visit, some tests, still no answers. Go home the next morning and go to sleep, another seizure! This time he was admitted to Dell Children's Hospital and after much testing was diagnosed with another rare seizure disorder, Benign Rolandic Epilepsy. Through many trials, episodes, a status seizure that caused a three day hospital stay in the PICU, medicines not working, struggling in school and with his peers, sleepless nights, test after test after test.... here we are 2 + years later.
A few weeks ago we were out camping and Isaiah had another seizure that would not stop on its own. We were in the middle of no where with no phone service. I had to administer his emergency medicine and we rushed him to the hospital ourselves, 30 minutes away. He had stopped seizing by the time we got there, but this was two weekends in a row that we were in the ER for these seizures. The doctors decided to send him to Dell and admit him again. Once more God blessed us with a miracle! There was on Epileptologist on that week at the Epilepsy Monitoring Unit at Dell. Unbeknownst to me, Isaiah's regular neurologist had been trying to get him in with this Epileptologist because he was baffled that he could not get Isaiah's seizures under control. However the process is long because the Epileptologist, Dr. Clarke, is booked out about five months, and even longer to get a spot in the Epilepsy Monitoring Unit. Well wouldn't you know, they also just happened to have ONE bed open in the E.M.U! They asked if we wanted to stay to get testing started on Isaiah to see what was really going on. OF COURSE WE DO!!
A week in a room at Dell, and a ton of tests later, Dr. Clarke had a new diagnosis for us... Jacksonian March seizure disorder. Thankfully, this type of seizure activity is localized to one tiny area of the brain. The problem lies in that if the medicine doesn't keep things under control (which it has not done), the activity spreads causing the seizures to become worse and worse. The good news about it being so localized, is that Isaiah is a candidate for Laser Ablation surgery that could possibly cure him!! There are a few more tests to be done to find out the exact location of the lesion that is causing the trouble, but surgery is planned for sometime this summer.
Isaiah does have medical insurance, but there is still our portion that has to be paid. The bills are quickly adding up. We are asking for help with all of the expenses. Any and all help will be a blessing. Any donation no matter the size will help. And please, above all else, keep my baby boy in your prayers! Thank you all, and God Bless!
P.S. I will post updates as we find out more.
Isaiah is my 12 year old son. He loves to fish and play video games! He is an amazing little boy, who just wants to live a normal life...
However he is going through, and has been through so very much. At 6 months old he was diagnosed with a rare seizure disorder, Infantile Spasms. The prognosis for this was devastating. Most children don't "get better" with the type of seizures he had. But miraculously, by the grace of God, he did. From the age of 1 year on he grew up like any normal little boy, no medications, and no more seizures.
Everything was fine until a few months after his 10th birthday. November 24, 2012 Isaiah laid down with me to take a nap in the middle of the day, which was odd. After being asleep about 15 minutes I felt him tossing and turning, or so I thought. I turned over to him having a seizure. Hospital visit, no answers, go home, another seizure as soon as he fell asleep. Another hospital visit, some tests, still no answers. Go home the next morning and go to sleep, another seizure! This time he was admitted to Dell Children's Hospital and after much testing was diagnosed with another rare seizure disorder, Benign Rolandic Epilepsy. Through many trials, episodes, a status seizure that caused a three day hospital stay in the PICU, medicines not working, struggling in school and with his peers, sleepless nights, test after test after test.... here we are 2 + years later.
A few weeks ago we were out camping and Isaiah had another seizure that would not stop on its own. We were in the middle of no where with no phone service. I had to administer his emergency medicine and we rushed him to the hospital ourselves, 30 minutes away. He had stopped seizing by the time we got there, but this was two weekends in a row that we were in the ER for these seizures. The doctors decided to send him to Dell and admit him again. Once more God blessed us with a miracle! There was on Epileptologist on that week at the Epilepsy Monitoring Unit at Dell. Unbeknownst to me, Isaiah's regular neurologist had been trying to get him in with this Epileptologist because he was baffled that he could not get Isaiah's seizures under control. However the process is long because the Epileptologist, Dr. Clarke, is booked out about five months, and even longer to get a spot in the Epilepsy Monitoring Unit. Well wouldn't you know, they also just happened to have ONE bed open in the E.M.U! They asked if we wanted to stay to get testing started on Isaiah to see what was really going on. OF COURSE WE DO!!
A week in a room at Dell, and a ton of tests later, Dr. Clarke had a new diagnosis for us... Jacksonian March seizure disorder. Thankfully, this type of seizure activity is localized to one tiny area of the brain. The problem lies in that if the medicine doesn't keep things under control (which it has not done), the activity spreads causing the seizures to become worse and worse. The good news about it being so localized, is that Isaiah is a candidate for Laser Ablation surgery that could possibly cure him!! There are a few more tests to be done to find out the exact location of the lesion that is causing the trouble, but surgery is planned for sometime this summer.
Isaiah does have medical insurance, but there is still our portion that has to be paid. The bills are quickly adding up. We are asking for help with all of the expenses. Any and all help will be a blessing. Any donation no matter the size will help. And please, above all else, keep my baby boy in your prayers! Thank you all, and God Bless!
P.S. I will post updates as we find out more.