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Jan 7, 2016
On Sept. 11, 2009, the Lord blessed our family with the birth of Stephen Dale Hagenseker. On day two of his life, he began having seizures that have proved to be a challenge ever since. With deep faith, much love and many prayers, we continue to pursue a way to stop the seizures. We will use this website to update our family and friends on Stephen's progress. Please click on "Read My Story" for more details on Stephen's current diagnosis.
On Thurs. morning, Dec. 17, 2009, we received very devastating news regarding Stephen. Due to the EEG readings, the progessive nature of Stephen's seizures and the resistance to medication, these symptoms were used to diagnose a syndrome to classify Stephen. One of our neurologists called it "Early Infantile Myoclonic Encephalopathy". There are only 80 reported cases of this syndrome, ever, worldwide. Stephen is number 81. Our other neurologist called it "Early Infantile Epileptic Encephalopathy". The one word change does not change the diagnosis. We were told that Stephen would have severe mental retardation, with only 2 years to live, maybe as long as 4. Due to the fact that all tests administered on Stephen are normal and they are unable to identify a cause of the seizures, they are unable to label Stephen’s condition as a disease. The neurologists explained that they will continue to seek answers through further tests. Testing is now being done for conditions that don’t normally cause seizures, in hopes of finding something that isn’t “normal”. If a cause was found, it would help the doctors identify treatments needed and specific outcomes based on an actual disease. It is still believed that if the seizures can be controlled/limited/stopped and his brain can get some rest, then Stephen’s awake and alert time will increase, allowing for learning and development. Therefore the diagnosis and outcome can possibly be changed. Given this hope, we continue to try new meds and concepts, even though the options are extremely limited now. Stephen’s brain is currently so tired from all the seizures that he mainly just sleeps. He has practically slept the past several months away. He has not been awake and alert for any significant time enabling him to learn and develop. He is already beginning to show signs of being a little behind developmentally.
The Lord has brought us through this troubling experience to where we are now. We stand here at this time, not alone, not even by our own power or strength to stand on our own legs and feet. The Lord is with us, giving us strength and power to face the next minute, another hour. We can’t even look toward the next day. He isn’t just standing by us, He is now carrying us.
Stephen Dale Hagenseker has been prayed for and loved, by many, from the day the pregnancy was announced. There was so much excitement surrounding his birth and he has truly proven to be a very “special” baby. The Lord has blessed our family by giving us Stephen. We do believe in miracles. We know the Lord has the power to heal Stephen. We want the Lord to heal Stephen … but we want God’s will most of all. Thank you for your love and support and especially your prayers.