Jonathan has Nieman Pick disease; The courage he shows, knowing he is dying, is admirable!
In his bedroom, Jonathan gritted his teeth in pain as he looked at a picture of Jesus suffering on the cross. He began thinking more and more about Jesus lately, because he knew he would be seeing him soon. In his final stages of Neiman Pick disease, coughing became an hourly experience. He also had trouble communicating, but his mother always seemed to know what he needed. She'd come running into the room to help him sit up until the coughing subsided.
At the age of six years, Jonathan knew he had a silly sounding disease. When Mommy took him to the doctor, he overheard the doctor talking about a disease named Kneeman Pick. Of course it didn’t mean anything scary to him then until…At eight, he once again overheard the doctor tell his mother that he wouldn't live long, that he had an enlarged spleen and liver. He didn't know what a spleen was, but knew that his liver was very important. Jonathan remembered how shocked he was at hearing he wouldn't live long and how he wanted to hide in the corner to cry. Knowing that he could not show, so he calmed himself down in time when his mother came back into the room. After that, he learned to bottle all his emotion inside, giving her a big smile whenever she asked how he was. Most nights he did cry though and had bad dreams of a large liver chasing him. The next morning he promised himself to make the rest of his life the best that it could possibly be. He began to think of projects to do.
Jonathan went to his computer and looked up Knewman Pick. Oops, I spelled it wrong. He typed N E I M A N N P I C K and that's when he learned what he was up against. Jonathan read out loud, "A biochemical disorder affecting a lipid (fat) called sphingomyelin, resulting usually in progressive enlargement of the liver and spleen (hepatosplenomegaly), "swollen glands" (lymphadenopathy), anemia and mental and physical deterioration." He couldn't pronounce those big words and skipped over them. He stared at the screen and felt overwhelmed. Big tears rolled down his cheek and wished he didn't look it up. He sat there for some time before turning off the computer.
Remembering what he promised himself he would do, he asked his mom for a diary. When she got him one, he began filling the blank pages with his thoughts on how his disease made him feel. He started right from the beginning when he first heard that strange name. He remembered it all so well and recorded everything.
As the days passed he asked for another diary. His mother never questioned him and Jonathan was thankful for that. He didn’t want to explain. This is how he got through the days and nights. Life’s obstacles showed its ugly head many times and as his disease progressed, he never knew what would come next. Each day became an unknown mystery to him.
He began to find out more and more on how his disease reacted. Unfortunately, he had first-hand knowledge of its progress. He wrote about the muscle spasms that progressed. Walking became slow and painful, but he managed until one day he knew, in no uncertain terms, that he was slowly losing control of certain parts of his body.
One morning he woke up to go to the bathroom and as he pushed up carefully to stand, he fell down. His ability to walk by himself became a problem and he yelled for his mother. She came running into the room and saw him on the floor. He smiled helplessly up at her. Her worried look softened as she helped him up and they walked to the bathroom together. His hard-fought independence came to an end that day.
Bedridden and overcome with pain, even his writing suffered and Jonathan knew he had to give up on that project. His last words in his diary were; "I feel as if my life is moving in slow motion; so much is happening to my body. I'm going to start a new project." He began a collection of lighthouse statues. When he and his family went on vacations, he got a statue. Before long, his collection became large and he loved looking at it. His friend, Brandon picked up a sculpted Leaning Tower of Pisa and the Leaning Tower of Niles and Jonathan was so happy. This completed this project.
Jonathan's third project was painting. He painted with his fingers mainly to take his mind off of his pain. He looked at the many frames of his work hanging on the wall where his mother hung them. Some of the pictures showed what he thought pain and suffering should look. These pictures made his mom cry, but she hung them up anyway. Pain made him feel alive, even if it sometimes became unbearable. One of the picture on the wall was where he portrayed his love for his mother. He created a silhouette of a mother and son. It wasn't very good, but he worked hard to get it just right. When his mother saw it, she cried and hugged him. Her reaction surprised him but made him happy too.
Throughout the years, living with this disease wore him out where even his coughing became a struggle! Communication became too hard, so he just listened to his mother talk and read to him. This was easier. Jonathan took a look around at his room and felt proud of what he had accomplished. He closed his eyes to rest. It seemed he was so much more tired lately…
His mother found him with a beautiful smile upon his face. She kneeled down beside his bed and cried, "You're at peace at last, my son!"
Jonathan was fourteen years old when he passed away peacefully. All his projects where on display at his funeral where everyone could look at what he accomplished in his lifetime. His diaries were there, too, educating people on what happens to the body when suffering from Neimann-Pick.
Niemann-Pick disease can affect the brain, nerves, liver, spleen and bone marrow and, in severe cases, the lungs. Progressive deterioration of the brain, nerves and organs cause the main symptoms. Niemann-Pick is an inherited disease with no known cure, but research continues.