ETHANS JOURNEY

Hi my name is Denise ,and I’m the mother of a oeis warrior my son has been fighting since the day he was born , he has had multiple surgeries he started having issues in the wound well us never knowing if he would even make it but he defied the odds then we were in the Nicu 5 months after 5 surgeries and several blood transfusions , he came home still having issues but we fought through them we were told he wouldn’t walk but he runs he has lived life through all the pain everyday he was born a oeis warrior which is a rare birth defect that affects only about 1 in 500,000 babies only about 1 in 200,000 live through this at birth he was born with organs outside his body his bladder was split ,as well as his boy parts , he had no anus which resulted in him needing to have a colonoscopy bag his bladder is so small it doesn’t function so we needed to also get a urine bag as well ethan is now on surgery 14 overall and about his 20 th hospital stay he will require multiple surgeries in addition to the one he just had he’s currently impatient on March 4 he had to have pelvic surgery and have external fixations placed to being his hips and pelvic closer they are extremely painful as these are rods placed in the bones the pain has been excruciating for him he screams in pain so we are currently impatient this has required me to take a lengthy leave of absence from work to be with him 3 hours away from home I have been the only parent to Ethan since he was born and it’s hard but me and him have fought this journey together hard but this has put me out to stay in the hospital with my baby on a unpaid leave but I wouldn’t trade it for nothing at all but we got a long road ahead of us Ethan has another surgery Monday then many more to follow thank you for any help with medical supplies , Ethan gifts to keep him entertained , it’s all amazing