HAYDEN'S STRUGGLES

 

Brief Summary: Hayden Brent Casavechia was born June 1, 2011. After a perfect pregnancy, our miracle child was finally here! We had a few scares at birth that were quickly resolved. We headed home from the hospital four days later as a happy family of three! He had the “hiccups” from birth and struggled to take a bottle. He would rather eat out of his medicine feeder. At four weeks old, we took him on his first beach trip. His “hiccups” were getting more severe. At six weeks old, we headed to Jackson, Mississippi to visit the emergency room at Blair E. Batson’s children hospital for seizures. Hayden went through a variety of test from video surveillance EEG, EMG, EKG, MRI, spinal taps, urine samples and the list continues. On July 20th, our life changed forever. The perfect life that we lived was now completely crushed. Hayden had bilateral white matter damage. We now had to wait two months to determine which Leukodystrophy would be diagnosed with. Even though his prognosis was poor, we would not give up on our miracle. We spent the next two months taking pictures, swimming, going back to the beach, and just having fun like a normal family should. September 14, 2011: We headed to Blair Batson to receive our diagnosis. As we waited in the room, we knew that his diagnosis was going to be poor. I thought I was “prepared” but little did I know I was severely “unprepared.” As our genetic counselor entered the room, she begins explaining Hayden’s diagnosis. She informed us that he would never walk, talk, or live past childhood. At this moment, I heard NOTHING else. My life was what seemed to be OVER! Laura did say one thing that I will never forget, “ Hayden will set his on goals in life". Once I finally calmed down, I asked where do we need to go? Which  hospital specializes in ASLD? Our answer was even more crushing. We are the third case in the USA. There is not a Doctor that specializes in it. There is NO cure. There is no medicine to stop it. The white matter will continue to break down.  Everyone knows that Brent and I are both "hard headed" and I feel that the worst part of all of this is not being able to fight for what you love. Atleast cancer and heart failures have a cure rate and a CHANCE. We are being given ZERO CHANCE.   As we lean on God, we are reminded that seizures do not occur in Heaven. So please pray that we can feel a little touch of Heaven here on Earth! A Battle of Seizures and Medicines: As he grows, we will continue to swap his medicines. We finally had eight weeks seizure free. Our life seemed like it was back to normal. How can we possibly have another seizure after eight weeks seizure free? Life seemed back to “normal.” On Thanksgiving, they came back in FULL force. We have made two trips to the emergency room, had hundreds of seizures, and spent hours researching. We are taking four different seizure medicines and have zero luck. I will never lose faith that one day we will have a seizure free day again. I am praying for a little bit of heaven to come down to EARTH and miraculously give us another seizure free day.