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A Lifetime of Making Sure Everything is Alright

A Lifetime of Making Sure Everything is Alright

A new baby is the most joyous event in your life. The wonder of a new life filled with hope and promise. My son Julian (or Jay as we call him), so little and innocent, began to have what we thought were fainting spells at the very young age of 6 months. With several trips to the doctor’s office (and no answers), a trip to the Children’s Hospital was the next step. After a multitude of tests and re-tests, we obtained a diagnosis of Infantile Spasms. We quickly tried to gather as much information as we could possibly find about this diagnosis - which was not easy in the days before the internet. This began the yearly trips to the neurologist’s office for the EEG, blood tests, motor skills and reflex tests, along with all of the normal questions about what has life been like. These frequent trips to the hospital provided us the opportunity to develop relationships with many of the office staff and doctors, which will forever be in our hearts for all of the smiles and caring they provided along our journey. They just wanted to make sure everything was alright.

Jay went through school with all of the trials and tribulations of a normal child. As his 16th birthday approached he soon realized that his life was much different from his friends at school. He was not able to get his driver’s license due to his epilepsy. This was a hard pill for him to swallow. When he turned 18 the dialogue about him possibly having brain surgery to try and get a better handle on his seizures - which were now beginning to become more of an issue in his everyday life - and possibly allow him to drive. This process was a new procedure that had mixed results at this point in time with no guarantees. Months of testing, weeks of missing school and now a long scar on his head. This was not to be the miracle we had hoped for. We just wanted to make sure everything was alright.

Jay did not let this alter his life, he started working. It was quickly apparent that most people are not only unfamiliar with seizures, but they also are extremely uncomfortable being around people with seizures. Jay tried to do a good job and be a dedicated employee, (even getting up at 4 am, walking 3 miles to the bus stop and back every day). As his seizures became more and more of an issue in his life, his employers did not seek to understand and eventually let him go. He did not understand, after trying so hard, how people could be so cruel. He thought everything would be alright.

Eventually Jay went back to school, taking classes in something that was always a passion to him: drawing & graphic arts. As he was getting older, he eventually was transferred into the care of a new hospital and a new neurologist, Dr. Mark Spitz. Jay immediately felt like Dr Spitz understood his journey and could now discuss things with his doctor as an adult. Dr. Spitz brought up the possibility, now with new technology, that brain surgery might again be an option for Jay. Again weeks of testing, missing school and lots of anxiety, once again this was not an option for Jay. He returned to school with more determination to get his life going in the right direction. He just knew everything was going to be alright.

As Jay entered his twenties, his seizures were becoming much more severe then he had experienced in the past, hoping the Vegal Nerve Stimulator would help him get control over his seizures once again, this was not the answer for him either. Jay’s seizures continued to be uncontrollable. We always thought everything would be alright.

On Christmas Eve 2008, Jay lost his lifelong battle with epilepsy, of what we later found out was Sudden Unexplained Death in Epilepsy (SUDEP). Jay was just 6 months shy of earning adegree in Graphic Arts that he had worked so hard for. His college issued an Honorary Degree to his family for his hard work and dedication. As we move forward and remember the great loss we have suffered, we now say that at least we know he does not have to fight his own body everyday. I think he would want us to know he is at peace and that everything is alright.

Arlene Rightsell
 

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