jamie has broken rods and other problems occurring
Donation protected
https://www.youtube.com/watch?v=2SWMdY8UcUE&feature=share My fiance's name is Jamie. She was born 2 months premature. She was diagnosed with Ehlers Danlose Syndrome in infancy, and around 8 months of age, a spinal curve was discovered. She had surgery for the Scoliosis at age 2; however, it didn't help and my spine progressed to kyphosis(multiple curves) with 159 degrees curves, 18-20% lung capacity, and her ribs were twisted around her spine. She had a halo traction placement in January 2012 and stayed in a halo for 7.5 months. She had the first phase of surgery on August 16, 2012. The doctor had to break 10 ribs to get to her spine and she ended up with a trachea due to developing pneumonia. The second phase of surgery was September 20, 2012, she also developed a pressure sore at this time. 5 years post-op, She woke up to pain in her spine with what looked like a boil; it popped and the wound hasn't fully healed. She has seen wound care since, and it has been "packed", cauterized, and even a same-day procedure to clean it up/cut out whatever the issue was and even still, the wound is still there. We had Xrays done and sent off to her surgeon, and come to find out, she has broken rods and in need of revision surgery.
Organizer
David Piazza
Organizer
Lafayette, LA