- Posted June 22, 2014 by
Medford, New Jersey
This iReport is part of an assignment:
Raising a special needs child
It was a refreshing start to first grade and as a detailed special educator he was of course prepared with all the supports necessary to succeed. In true Jamieson fashion he threw us a curve and began having staring episodes accompanied by aggressive outbursts. His pediatrician dubbed him “The Curve in the Road Kid” for as soon as they figured things out he presented with new symptoms.
In the second grade our life as we knew it at the time fell apart. Jamieson began having severe behavior outbursts and was losing his developmental skills. He could not walk, was having multiple seizures, and his academic abilities were disappearing before our eyes. By March 1999, Jamieson was having 100-300 seizures a day. That year he had 11 hospitalizations for seizures, surgery and complications from seizures. In August of 1999 we learned that he had a Mitochondrial Disease which was the underlying cause of all his other problems. At that time, little was known about this group of diseases and thee prognosis was poor. We were told he had a 50% chance of living to see his teenage years and the odds of having another child with this debilitating disease were 99%. We struggled to find our new reality in a “rare” disease world.
Since his diagnosis, Jamieson’s disease continues to progress. It now affects his ability to eat and he receives supplemental feedings via a gastrostomy tube. He has neuropathy of the GI tract and his colon no longer functions properly. His ability to swallow has been compromised. He has chronic pulmonary issues and sleeps with bi-pap and oxygen. He has an enlarged heart and must take medication to keep it functioning properly. The disease has attacked his bone marrow, causing a platelet defect and bleeding disorder. His immune system is affected and can no longer make antibodies to fight infection. He is hospitalized every 21 days for IVIG infusions which give him an artificial immune system.
Despite all of these medical issues Jamieson would not want you to feel bad for him. He is thriving emotionally with the support of his friends, church and school staff.
He uses a power wheelchair and a laptop with specialized software which helps him use his energy efficiently. Technology has been a god send as are the advances in cellular research. When he was a junior in high school, he gathered his two favorite doctors and informed us that he planned on attending college in Philadelphia and living on campus. When we began questioning his decision he immunologist replied “We haven’t worked this hard to keep him alive to stay in a bubble. He can do this and you need to let him do it.”
While living at school was a challenge, he was determined to succeed. In May he graduated Saint Joseph’s University with a Bachelor’s of Science in Film and minor in Communication studies. His experience has truly brought to life the meaning of the African proverb “It takes a village to raise a child.” His graduation was a milestone not only for him, but for everyone in the village.
Jamieson is determined to make a difference in this world and touches the hearts of everyone he meets. He is active in Campus Ministry and focuses his efforts on social justice. If you met him on the street, you would have no idea that he is living with this disease.
Jamieson is fighting this disease with a remarkable attitude towards life. He served on the board of the Delaware Valley Chapter of the UMDF and previously was the NJ Youth Ambassador. He spent over 3 years working on legislation for NJ Mitochondrial Disease Awareness Week; testifying before the state senate, attending voting sessions and finally seeing it signed into law in 2007. His dreams of a national and international awareness weeks have far exceeded anything he could have dreamed of.
Our journey as his parents is far different than the one we envisioned. We envisioned a big house with tons of kids and all the craziness that goes with it. Our journey instead has brought us on a path we wouldn’t have chosen ourselves but it’s a path we wouldn’t trade for anything (except a cure). Jamieson teaches us every day how to live life to the fullest, be positive and pay it forward.
- My life