Isabella's Medical Move to Boston

My name is Gisselle, I'm a proud mom of a Gastroschisis survivor named Isabella. She was born on October 17, 2016 at 33 weeks in Tampa, Fl with a rare disease called Gastroschisis, which is a birth defect of the abdominal wall, the baby's intestines are outside of the body, exiting through a hole beside the belly button. In Isabella's case the hole was small and closed while in utero, lost blood flow and more than 90% of her small intestine had to be removed in a surgery 8 hours after she was born then diagnosed with Short Bowel Syndrome (SBS). Doctors truly believed she was not going to make it thru the night, she is 11 months old now with a long road ahead, she is much better now but we have had a lot of bumps in the road. We were transferred to Miami, where they wanted to do a multivisceral transplant, then back to the hospital in Tampa where she was born while I fought insurance to get her to Boston Children's to get the best medical care for her disease, we have to travel every 6 weeks to go to her appointments. She has now a Broviac which is a central line that is placed near her heart where she gets IV nutrition 12 hours a day to keep her alive and a gtube to get feeds because she still doesn't eat much by mouth, we have a daily routine which most people would never be able to endure. She was 185 days in the hospital before going home for the first time. She looks perfect in the outside but short gut is a silent disease. She has had 3 major surgeries and countless procedures, she has been through more in her 11 months than most people will in their entire life. We currently live in Tampa, Fl where there are no hospitals specialized in SBS. I'm asking for help because we need money for this medical move. My dad is working hard to pay my bills, her dad doesn't help at all making it clear many times he doesn't want a sick child. It has been very hard but with the help of my family and friends who became family we have made it. Regardless, we need money for everything. Soon we might be moving our whole lives to Boston where she can get specialized care, she has a long journey ahead and relocating is the best thing to do. Since I was pregnant, I've been trying to do everything possible to keep her alive and healthy. She has a complex medical diagnosis but she also is a fighter who against all odds keeps on surprising even her medical team with her determination to live and thrive. She deserves the best medical care throughout her life. Please feel free to share this post, any amount will help us, no amount will ever be too small, everything will be used to help us relocate to Boston to get Isabella the best medical care. Thanks for reading Isabella's story, she is a small miracle that I'm blessed to call my daughter, please keep us in your prayers.