Jaya is my 17 yr old son with Caudal Regression Syndrome/Sacral Agenesis, Spina Bifida, Chiari I Malformation, Hydrocephalus, Eosinophilic Esophagitis, Neurogenic bladder/bowel. He has had more than 36 surgeries so far. Even with all these diagnosis, Jaya is a wonderful young man with an amazing spirit! I learned during my 18 week ultrasound that Jaya had spina bifida. We were told the worst possi
ble case, that he would probably never sit unassisted, would never walk, possibly have mental retardation, and that was even if he survived the pregnancy. When he was born, he had even more medical problems they weren't expecting. It was a few month later when we learned he had Sacral Agenesis, meaning his spine completely stopped forming at the L2 vertebra. Jaya was 3 months old when he had his first shunt malfunction, and almost didn't survive the surgery. His brain hemorrhaged when they removed the shunt catheter from his brain. He lost a lot of blood. Though it was a long recovery, you would never guess it today! He has had 5-6 brain surgeries total. When he was 4 yrs old, he had a bowel surgery which ruptured a few days later, again leaving him in critical condition as he fought high fevers from the infection. When he was 7, he had surgery to remove his legs at the knees and use the bones to stabilize his spine. This was a very difficult decision, but one I felt would benefit him and give him more independence. He did amazing, after a few complications, and has never looked back. Jaya loves sports and is very active. He is smart and does well in school. He makes friends very easily and is loved by everyone. Jaya also has two big sisters whom he loves to pester and torture! His face is full of freckles, which is something everyone comments on! He has a spirit about him which draws people in. Though Jaya is shy when first meeting people, they still want to get to know him. I am starting this page to share our wonderful story. Jaya is such an inspiration to our family, I believe he will inspire many more! I am blessed to be his mom, I thank the Lord He chose me to be Jaya's mom. I hope our story gives you hope. We welcome your prayers and words of encouragement! Please share Jaya's story, you never know who needs the inspiration and encouragement. If we can help just one person, then telling our story is worth it!