Xavier's Story

Meet our son Xavier, he's a happy and loving 17 month old that is energetic and full of life. He was always smiling, laughing and very playful. Xavier was a miracle baby truly sent from the heavens. You see…my wife was told in her early 20's that she would not be able to conceive a child due to medical issues with her ovaries. Without trying to get pregnant, to our surprise we found out we were having a baby. Our life was truly about to change. After some time, we began noticing Xavier change just after his 12 month check up. Xavier stopped speaking and began having spasms. He started experiencing strange gazing spells followed by sudden head drops. We would later find out that Xavier was experiencing a strange form of seizures. We took him to several specialists (Neurologists/ Epileptologists) for different opinions. The doctors began prescribing Xavier medication after medication, each resulting in a variety of side effects from aggression to incoordination and an over all "zombie-like" presence. While on the medication he continued to have seizures and his coordination was so bad that he would stumble and fall, which made us worried that he would severely hurt himself. Xavier was also put through a variety of tests by the specialists known as the "$1 Million Dollar Work Up" (MRI, PET Scan, EEG, etc...). You can imagine how heartbreaking it is as a parent to have to put your small child through all of these tests. Some of these tests took about a week to perform and were given twice within a month's time. The test results seem to show abnormality on the right side of his brain which occurred during his development as he was growing, and eventually caused him to have seizures. The doctors believe it is Medically Intractable Epilepsy possibly related to Cortical malformation in the right hemisphere. Since the meds were not working, the team of Neurologists were recommending a Hemisherectomy (removal of the right side of the brain). Can you imagine?… Removing half of your child's brain. Just writing it breaks my heart. As a human being, I don't feel I have the power to make that decision. One decision we did have to make unfortunately, was to move out of our home due to the high cost of his healthcare. My wife had to decrease her hours down to less than part time in order to care for Xavier since obviously day care was not an option. To make matters worse, we will have to split up our family to attempt an alternative treatment in another state. I will have to remain here because I provide my sons medical insurance through my employer. As a parent, all you can do is exhaust all options before going through such drastic measures as to consenting to the removal of half of our sons brain. As a father, I can't imagine being without my son. As a husband, I can't imagine not being by my wife's side to help her and be her support system through this tough journey. I can only pray that the struggles we will encounter will eventually end, and lead to a better life for my son and our family. For now, the journey ahead is unknown…but we will keep our faith strong, our prayers loud and our hope infinite because this is only the beginning of our journey. I'm usually not a person to ask for money but unfortunately my sons medical bills have left us without our own home and has temporarily separated our family to find him a cure. Your generosity will assist us in medical expenses, travel expenses to and from doctors and eventually bring us back together as a family. We thank very much for reading our story.