Ryan Joseph Kasper was born on June 1st 1992 at Philadelphia Hospital two weeks shy of my first wedding anniversary and at the tail end of my 2nd year of medical school. I didn’t know it at the time but he was born with a rare genetic disorder called Lafora Disease that would take him from me just a few short months after his nineteenth birthday on August 24th 2011.
From the beginning Ryan was a reflection of me. I liked football so he liked football. I liked music so he liked music. I played guitar so he played guitar. I liked computers so he liked computers. He was a “mini-me” of Joe Kasper.
Although Ryan inherited his love of music from me he developed his own individual taste in music. His first favorite artist was Elvis and I don’t know where that came from. He then went through his Motown phase which was definitely influenced by my wife Karen. He eventually moved on to more contemporary artists like Tom Petty, The Bare Naked Ladies and AC/DC. He had a passion for music which brought him joy until his final days.
Ryan and I shared a love for football. I was a Raider fan so Ryan became a Raider fan. However, he far surpassed me in his knowledge of the team. He was a year round fan. He watched the scouting reports, the injury reports, the draft and any other morsel of news he could garner from the internet. We watched every Raider game together on TV. In his last two seasons, I would put two reclining chairs side by side to watch the game with him. I did this because he would get so excited that I was afraid he would have a seizure. It didn’t matter to him that they had the worst record in football… he would never miss a game. We were able to see a few live games. Two years before he died, I was able to take him to a game in Miami (Dolphins vs Raiders). In true Raider fashion they lost in the last few seconds of the game. We made it through the flight from New Jersey to Miami, the trip to the stadium, the excitement of the game and the flight back home. I was so happy that we made it home and had a great time without a seizure. However, about twenty feet from our car in the airport parking lot he had a seizure. Fortunately, I was used to them at this point and was able to get him into the car and manage the seizure. By the time we got home he was almost back to normal. We kept that seizure our little secret. The next year he was able to see the Raiders play the Giants at Giants Stadium as a guest of the Raiders. The Butterflies Program from The Valley Hospital made arrangements with the Raider organization which allowed him to sit on the sideline and meet the players. They gave him signed memorabilia and made it a very special day for him. Although by this time he was relegated to a wheelchair he was all smiles that day. This was a very special day for the entire family. To give you a better sense of his love for the sport and his team, he is buried in a Dave Casper Raider jersey and has the Raider emblem carved on his headstone.
Ryan was also a computer nerd. He loved everything computers and technology just like his dad. He could use the computer before he could read. As he got older he became a big “video-gamer”. Call of Duty was always his favorite. From this game he developed a deep respect for the military. He liked the code of honor, the uniforms and the respect that came with being in the military. He played the game with his truest of friends, Zac Conklin. They both dreamed of growing up to be soldiers and serving their country. At first I thought these were just childhood fantasies between adolescent buddies. However, Zac is serving his country as a Marine today.
Ryan not only liked to play the video games, he had a robust curiosity on what made them work and was always eager to improve the performance of his computer. I taught him how to upgrade the memory and video card to make his computer faster. Eventually he taught me how he could “overclock” the CPU to squeeze more power from his “box”. Eventually, he wanted to build his own computer from scratch. He spent the entire summer after his sixteenth birthday researching the parts necessary to build his ultimate computer. I told him he had to pay for it with his birthday money so he became an expert shopper for the best deals on the best equipment available at the time. I have never seen him more excited as the parts would arrive in the mail every day. Unfortunately, by the time all the parts had arrived and it was time to build the computer, the signs and symptoms of his disease were progressing more rapidly. I could see his dexterity and cognitive skills declining but at that time he had not been diagnosed with Lafora Disease yet. I thought the decline of function was from his seizure medications. So he built his dream machine with a little help from his dad. He was very pleased with the result.
Ryan loved sports and played in all the little league sports. Ryan never excelled as an athlete but this was not due to his disease, it was due to his shyness. He never wanted to be the center of attention. One day I asked him at a soccer game “Ryan, why didn’t you kick the ball when you had a chance?” “Well dad” he replied “If I kicked the ball then everybody would be looking at me.” It was at that time I knew he was never going to be the star of his team. This was fine with me and he knew it.
Ryan’s first seizure was on the baseball field in 3rd grade. Although he never wanted to be the center of attention he always wanted to participate. So Ryan continued to participate in sports. In the summer before entering high school Ryan told my wife and me that he wanted to play football. Needless to say we were worried yet we wanted Ryan to lead a normal life. So we received clearance from his neurologist to play football. He joined the team, got his uniform, took the pictures and had a seizure the first day of practice. Again you can imagine how he felt. The new kid in school trying out for the football team and trying to overcome his shyness and being taken off the football field in the ambulance because of a seizure. So his first day in a new school everybody knew he him as the boy who had the seizure on the football field. This was not easy for one who never wanted to be the center of attention. But he still managed to move on.
That seizure on the football field really marked the start of his rapid decline, both mentally and physically. I was always amazed that he was able to go school and function as a student. Each day he had to: deal with the fear of having another seizure at school; pay attention in class; overcome his shyness; make new friends; do his homework; do well in school, all the while he required three or four anti-seizure medications. As we learned later he was able do this while having dozens of mini-seizures a day. It was at this point I learned that Ryan had Lafora Disease. As a physician I realized what was coming, a rapid decline in both his physical and mental abilities, culminating in his death in a few short years. After learning his diagnosis my wife and I could no longer justify putting him through the stress of going to school. Someone once told me high school could be tough for teenagers but this took it to a new level. Ryan never complained and found a way to be happy. Ryan was able to complete his sophomore year but by his junior year he was unable to physically attend school so we transitioned him to home schooling. Eventually he lost his coordination and was relegated to a wheelchair and then to a hospital bed where he required around the clock custodial care. Through it all he never complained. I am still amazed at his ability to find happiness in the smallest things. When he couldn’t play sports, he moved to the computer. When he couldn’t use the computer, he moved to music. He always smiled when I would come home from work and when he could no longer speak he always had a way to communicate with us that he was ok. Through all of this I never once heard or saw him feel sorry for himself. Watching Ryan handle adversity taught me many lessons but the most important one was that we can always find happiness and meaning in life no matter what life throws at us.
This website is dedicated to my son, Ryan Joseph Kasper, the person who taught me more about courage than anyone I ever met. The one who taught me how to face adversity and to grow from it. These lessons I learned from the “school of hard knocks”. I eventually went on to obtain my Masters in Applied Positive Psychology and obtained a formal education about resilience in the face of adversity. It was at the University of Pennsylvania that I developed the concept of co-destiny. The goal of this website is to share the knowledge I have gained through my experience and education in the hope that what I learned may help others not only to survive but to grow from their trauma.