Luciana Prandi is a 5-year-old girl from Katy, Texas who started having seizures at two months of age. We researched right away every single thing it could possibly be. I noticed spasms but they were so weak that some doctors brushed us off and wanted to give her the wrong meds. We fought, switched hospitals, and she started the right treatment that day. The doctors did genetic work ups and found nothing. There was also no evidence of any damage to her brain at that point in time. As time went on, we thought maybe she would just be delayed and still have the possibility of a “normal” life with hard work, good meds, and that fighting attitude we already saw in her!
Months later, her seizures got worse. She wasn’t gaining weight, she was slowly aspirating the yummy food the girls and I were making for her daily, and she was getting sick a lot. Her tone became floppy and tight. Hospital visits became more frequent and that’s when we realized this was going to be a long journey for our family. We were told she probably wouldn’t make it out of her childhood years. Yes, I asked what age and the doctor said sooner than later and to prepare. They also told us she probably had such a rare disease that it hadn’t been discovered yet but could! That means we could call it the Lulu, right?
We fight, love, support, and continue to research every minute. Lulu has the brightest smile, the biggest fight, and she is our superhero who NEVER gives up! She absolutely LOVES lights and can follow them, she has said “ma” and she knows the voices of each family member. She has taught us so much in just 5 years. Apple Homecare is very caring, always listens to what we need, offers advice when asked and always tries to help. Erick (our RT) always gets back to me, is kind, attentive, and gives great training!