About Noah
Noah was born on April 17, 2006 with a severe neurological disorder called hemimegalencephaly that causes seizures and developmental delays. Noah started out life having 55+ seizures a day. After experimenting with 4 or 5 anticonvulsants in a matter of months, Noah was scheduled to undergo brain surgery at Johns Hopkins Hospital in Baltimore, Maryland in August 2006. The hope was for the seizures to stop after a procedure of disconnecting the two halves of his brain. Unfortunately, at four months of age, Noah’s surgery was not a complete success as the neurosurgeon removed about one tenth of his brain. We knew this would at least buy us some time. Over the course of the next seven months, Noah made progress with his motor functions. He lagged behind other babies his age but began to make leaps and bounds compared to what we had seen prior to surgery. He was also thought to be seizure free during this period of time. As Noah was slowly weaned off one of his medications in March 2007, he began to show signs of less severe seizures. These occurred every few days or so. After multiple tests were performed, it was decided that Noah was, indeed, having approximately 40 seizures a day that we were not seeing. Only a handful of these seizures were escaping on the outside. In an attempt to completely cure Noah of his seizures, he underwent an attempted anatomical hemispherectomy on August 30, 2007. In this procedure, his neurosurgeon intended to remove the entire left side of Noah’s brain. Unfortunately, Noah did suffer from some bleeding issues. His neurosurgeon was able to remove more portions of his brain, which equated to approximately 50% of the left side of his brain. Noah progressed tremendously in about a year and a half but the seizures slowly returned, increasing in frequency, duration, and intensity. Noah had a third and complete anatomical hemispherectomy at Johns Hopkins on March 19, 2009. Since the surgery, Noah has acquired many new large motor, fine motor, and language skills. Unfortunately, we went through a period of time thinking his seizures had returned. It turns out this was simply his body’s way of letting us know he did not need to be on 4 seizure meds. What we thought were seizures were his body’s reactions to basically overdosing on unneeded medications. After removing him from 2 of the 4 medications, Noah returned to himself but only better! Recently Noah began to pull to stand independently and is very close to walking on his own. He is a social butterfly at school and has several girlfriends he kisses on the lips on a daily basis. We take each day at a time and cherish every miraculous moment we have with Noah. All we can ask for is God to grant us the strength and wisdom to make the right decisions for this little miracle He has put into our lives. What we ask of everyone around us is to pass on Noah’s story as a source of inspiration and encouragement to those who are less fortunate. Please pray for our little miracle to continue to shine and prosper in God’s light, and hopefully remain seizure free!
