would be seizures because of the immunization shots. The Pediatrician went on to say, “the old vials containing Mercury have been removed from the shelves”. So, we went ahead and proceeded with her first set of immunization shots. And afterwards I watched her like a hawk. I will add, we decided to skip immunizations altogether with her two younger brothers and they are fine.
Of course, when she began making odd movements, I rushed to the local E.R not once but twice, only to be discharged with a new prescription and simply advised to follow up with the Pediatrician. It was like the doctors were not taking my claims seriously. They thought it was heartburn or reflux. They seemed to question these “odd movements” that I was seeing because I was a new mom or I was in my early 20’s. They treated me almost as if I had zero creditability, but I knew that I had my “new mom’s intuition” and that was all I needed. In fact, the day after Christmas, we were at Stonecrest Mall and Victoria had a grand mal seizure. The jewelry store clerk was shaking her keys in Victoria’s eyes but she would not flinch, the paramedics who responded to the mall, inquired “if I had actually ever seen anyone have a seizure before?” The short answer was no but he didn’t need to know that.
Then on Jan. 2, 2002, my suspensions were confirmed, I was not a crazy new mom imagining things.
Victoria was diagnosed with infantile spams, basically seizures in infants. The Neurologist gave us three different medication options we could try that would “dummy her up” in his words. One of them being Topamax, another was a drug that was not FDA approved and we would have to obtain it from Canada or a drug called ACTH where we would inject her twice a day, basically a steroid. He went on to explain how tough life will be for her. The doctor was right about one thing, he said “she will be profoundly mentally delayed”. This only caused me to fight harder for what she can do instead of focusing on what she could not do. Later when she was diagnosed with Mitochondrial disease, they told me that I needed to worry about her quality of life, not quantity. Basically, in short, I needed to prepare for her funeral service as well as she will not walk or talk. When I pressed for more information about this new diagnosis, they said “she will not live past adolescence”. I must add that we just celebrated her 16th birthday and not only does she walk but she runs too.
Fast forward to Spring 2013, at this point we already tried every pharmaceutical drug presented, 13 different medications to date, we’ve obtained a $23,000.00 seizure alert dog from Ohio, met with a Neurologist at Detroit Children’s via Angel Flight, met with a Specialist in San Diego at a United Mitochondrial Disease Foundation (UMDF) conference and she also has a Vagal Nerve Stimulator placed in her chest which is basically like a pacemaker for the brain. She just received her third one, in fact that’s why we're at the hospital today, combating seizures has been my goal since Jan. 2,
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