Anthony DiMaria

Today was the day my beautiful baby boy, Anthony James DiMaria came into my world. It was March 1st 2001 and I was thirty-eight weeks into my pregnancy. I had a normal pregnancy. Anthony was born a little after 10:30pm weighting 6lbs8oz and 18 inches long. He was so tiny and so perfect. I could not believe he was mine. I was determined to be a great mom and had so many plans for his future.

Just about the time when Anthony turned one I mentioned to the pediatricians that I felt something was wrong. Anthony was late to sit and crawl it worried me. They told me not to worry because boys tend to develop slower and also Anthony was a very chunky baby. A few months had gone by and Anthony was crawling all over the place, but I still had a gut feeling something was wrong. We went to see a neurologist who examined Anthony and did an MRI on him. Everything came back fine and I was told to have another baby. He told me Anthony was held too much and he had “pretty baby syndrome” and if I had another baby I would not be so neurotic with Anthony. Needless to say when I left his office I was furious. A friend of mine who is a nurse suggested I see another neurologist, so I did. The new neurologist could not find anything either, but did want to follow up on Anthony in a few months...

Anthony had already started physical and occupational therapy services a few times a week. He was almost sixteen months and he was not showing any signs of walking. We went back to the doctors who could only diagnose him as being developmentally delayed. I was okay with this; I could accept that my son was a slow developer.

When Anthony was about twenty-six months he started to walk. We were all so excited. He had a walk like “Frankenstein” very stiff, but he was walking. Everyone told me it was just a matter of weeks before he will be running. Well it wasn’t. This went on for almost five months then he stopped. He would no longer walk or even try. This is when the testing begins. First they thought a form of cerebral palsy then a mitochondrial disease. Leukodystrophy was never mentioned.

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