Here's Isaiah's Story:
Isaiah was diagnosed with Juvenile Dermatomyositis on January 27th 2004. He was 2 and a half. Isaiah was diagnosed in Albuquerque, NM. The Rheumatologist that diagnosed him could not effectively treat him. We were rushed to Denver Children's Hospital and spent 3 weeks there while the Rheumatologists there stabilized him and started therapy. By the time we reached Denver Children's Hospital Isaiah had lost his ability to swallow and could no longer lift his head on his own. We were terrified he wouldn't pull through and that other vital organ systems had been effected. After Isaiah was stabilized we sought a second expert opinion at San Diego Children's Hospital. Isaiah's diagnosis was confirmed and aggressive treatment began. Isaiahs progress was very slow and we were told several times that he may never recover his range of motion or be able to feed himself again. But, Isaiah faced every challenge head on and proved all the specialists wrong. He had a few good years and his lab work steadily improved and his ability slowly improved.
When Isaiah was 6 things suddenly changed. We noticed his first Calcinosis deposit that looked like a pebble under his skin on his knee. Soon, the calcinosis spread like wildfire. Our doctors admitted that Isaiah's lab work was probably not providing accurate results and he has had active disease for a prolonged period of time. Within months, Sweet Isaiah was trapped in a body he hated and could not move. The Calcinosis took over his legs and he was unable to walk. He was literally crawling in his second grade classroom.
Isaiah has had 2 major GI bleeds due to steroid therapy and chemotherapy. He had to have emergency transfusions. He has had serial castings of his legs from the hip to the toes to attempt to improve his range of motion. He has had multiple surgeries to remove Calcinosis deposits from his hip joints, lower back and buttocks. He has had two surgeries for port placements, 1 emergency port extraction as he had contracted staph in the hospital, years of Physical and Occupational Therapies every week.
Isaiah is now seen at Phoenix Children's Hospital. It s closer to our home and our Doctor there treats him very aggressively. Isaiah currently undergoes two types of Chemotherapy. 1 weekly and 1 every 4 months, daily steroid therapy and a host of other medicines to try to keep him moving and comfortable. Sadly, our doctors believe Isaiah's liver is in trouble. He will have 4 procedures on August 19th, including a liver biopsy. Even when faced with these horrible medical procedures and constant hospitalizations he greets them with a smile and courage.
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