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Devon Victor, Translocation Trisomy 13 with balanced 5/13 translocation, 6/15/1995, Deland, FL
“He is a spoiled rotten lovable brat and I wouldn’t change him for anything.”
I’m Penny, wife of 26 yrs to Joe and mom to Nicholas (23yrs) and Devon (18 yrs). We did not have a prenatal dx for which I’m very grateful. We were given the same poor prognosis that you’ve no doubt heard yourselves. We were told that IF he survived his first 6 months, he would most likely die by his first birthday. We waited for that…but while we waited we encouraged all those things we were told he would never do. We were told he would most likely have heart and brain anomolies…he could have siezures….apnea…etc. He did/does not have any of those as yet. He does, however have multiple vision issues…some behavioral issues and no sense of personal safety. He had tubes put in his ears and a cleft palate repaired at 9 months. Ear tubes again at 2 yrs (which caused permanent perforation in both ear drums. He had penoplasty to release trapped penus and inguenal hernia repaired at 3 yrs, another inguenal hernia repair at 5He sat at 28 months, cruised at 29 months, crawled at 30 months, and took his first unassisted steps at 3 1/2 years old at the urging of his big brother Nicholas. He started PreK at 3 yrs in a multi-varied exceptionalitites program within a typical elementary school. He’s had 3 eye surgeries in 2008, and 8 days out from retina re-attachment surgery, he got Pancreatitis that would not resolve. It was discovered he had mal-rotated bowel that had begun to twist. He recovered fully once that was repaired. He walked across the stage (with his favorite teacher to guide him) to accept his diploma in May of 2013. He is a spoiled rotten lovable brat and I wouldn’t change him for anything.