Jamieson was a brilliant child whose life was on track until he entered the second grade. Then our life as we knew it at the time fell apart. He began having severe behavior outbursts and was losing his developmental skills quickly. He could not walk, was having multiple seizure types, and his academic abilities were disappearing before our eyes. Jamieson at that point 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.
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 without a bowel treatment each night. He is losing his ability to swallow, anything that he drinks has to be thickened. 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. His bone marrow, no longer makes platelets correctly so he has a bleeding disorder. His immune system is affected, in that he no longer has the ability to make antibodies. Even when he gets an immunization, it doesn’t work. He is hospitalized every 21 days for IVIG infusions which give him an artificial immune system.
Despite all of these medical issues, 24 medications a day, hospitalizations every 21 days and extreme exhaustion, Jamieson would not want you to feel bad for him. He is thriving emotionally with the support of his friends, our neighbors and school staff. Jamieson is in the 11th grade at Shawnee High School. He uses an electric scooter and a laptop with some specialized software. He is currently taking college prep coursework and is an A student who just happens to have a lot of medical issues. He is determined to make a difference in this world and touches the hearts of everyone he meets. He writes for the school paper, is in the Junior Executive Homeroom, cooks breakfast for the homeless, serves as a reader and acolyte at church, is an active member of the youth group and serves on Diocesan Youth Council. He also loves baseball and the drums. If you met him on the street, you would have no idea that he is living with this disease.
There is no cure for Mitochondrial Disease, and little research is being done. Everyday we see little pieces of his life being taken away from him. He fights the disease with a remarkable attitude towards life and wants to make a difference in this world.
Jamie has fought tirelessly to raise awareness of Mitochondrial Disease working with our legislature to designate the third week in September as Mitochondrial Disease Awareness Week.. He is currently the NJ Youth Ambassador for the United Mitochondrial Disease Foundation and serves on the board of the Delaware Valley Chapter.
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The following have generously sponsored the Jamming for Jamie Dinner and Auction