Support Brando's Journey: Helping Our Little Warrior Thrive

Meet Brando, a courageous little fighter born with an extreme case of esophageal atresia type C. His journey began on his first day born when doctors closed a fistula of the lower part of the esophagus connected to his trachea. The harrowing three-month stay in the hospital after that day, included weeks in the intensive unit. He battled through procedures and tubes, barely able to move from his incubator. Despite the initial challenges, the road ahead was fraught with more obstacles. At three months old, the doctors connected his esophagus pieces together. Two weeks later Brando was eating by mouth for the first time. A beautiful moment. A week after that he was refusing the bottle and we didn’t know why. A few days later he was discharged. This was Christmas Eve. We thought we had started a new chapter in life, but only four days later, Brando’s health plunged. Soon after leaving the hospital, he went from a happy to miserable. The situation got to its worst days after Christmas. He was spitting and sweating profusely, he looked tired and breathing was labored. We rushed him to the ER. He was intubated and taken to his main hospital as we were out of town visiting family for holidays. His throat had closed shut and he needed an emergency dilation. For the next three months, Brando and papà lived in the same hospital room 24 hours a day, enduring several medical procedures and setbacks. It was hard to split the family like that and my wife could not take days off of work as she is an independent contractor. After leaving the hospital, Brando would return every three weeks for a dilation of the throat to keep it open. After multiple hospitalizations and surgeries, Brando's struggles persisted. Two months before his first birthday, the main vein to the left arm was removed because it was wrapping around his esophagus, and his trachea was slightly pulled up to straighten the organ to help him breathe better and a gland removed to increase space in the body for parts to move more freely. He also contracted pneumonia while in recovery. A routine endoscopy some weeks later resulted in a punctured esophagus and fluid leaking into his body cavity which required a midnight emergency drainage tube placed behind his ribs. The expected week in hospital extended to over three. Around the time of his first birthday, he showed signs of a clogging throat. The signs forever too familiar. The doctors were unable to dilate Brando. Heavy worry set in. He was managing secretions well enough, but not for long. We dashed across the country for a second attempt. Failure number two. His throat was fully closed. He required 24 hour suction to remove spit that he could otherwise breathe. Something he did the first six months from birth most of the time. After a week in a new hospital ward, talking to other families of unforgettable stories, papà and Brando took a very uncomfortable ambulance ride back to his hospital. Almost three months of hospitalization followed. The family fractured once again. At the end of the first month marked an important moment. Brando received a very complicated surgery performed by a renowned American doctor who cut out scar tissue and reattached the esophagus pieces together in the hopes of forming a smaller and more manageable scar tissue. Success wasn’t free of compromise. The complication this time was that holes were made in the esophagus and the trachea during the procedure. The hole in the trachea was quickly found and stitched, but, alas the other escaped notice. Six months later he still lives with this menace that plagues Brando’s ability to live better. He also contracted pneumonia once again because liquids were leaking through the hole and traveling to his lung. Six weeks post op with layers of issues we finally were cleared to go home and unite with the family. After recovering from everything and being released from hospital we stayed as a family: Mommy, daddy, big brother River Blue (then 26 months old), Brando Ocean and twin sister Malibu Summer (then 15 months old), but just a month later he was hospitalized for a severely contagious respiratory illness we think he contracted from a routine hospital visit. The whole family was effected. I was sick as a dog, but miraculously the other children only had mild symptoms. At a year and a half old today, he still grapples with health scandals almost weekly. Since birth he has eaten through a stomach tube, but now since liquids in the stomach risk reaching the hole, he eats slowly, almost 20 hours a day through the duodenum. Brando requires constant attention, even while sleeping to monitor breathing, coughing, secretions, vomiting, etc. We are now very familiar with several pieces of home medical equipment that involves digestion and respiratory assistance including a stomach milk pump, a breathing assistance mask and a saliva vacuum. He needs physical therapy and he just learned to crawl three weeks ago. With two other very young babies in the house as well as a work load, we do our best to care for him and we want to do more. After over a year of asking doctors to help us find a geneticist and an eye doctor, we finally saw an eye doctor and learned three weeks ago he is severely farsighted and requires glasses thus explaining why he would go cross eyed often. His genetic blood tests are in the works. His resilience shines through as he embarks on a path of physical therapy and ongoing treatments. For a few months Brando is undergoing a practice of using stents in the throat to keep it open. This avoids more frequent dilations and seals the hole from exposure, but instead of staying in place for the expected 8 weeks, Brando swallows the stint about every two weeks. He has already had four stents since January and passing the stent through the rectum is painful. Brando's infectious smile and unwavering spirit inspire all around him. In spite of the pain, we smile through it all holding onto hope for a brighter future come some day sooner. Many tests of character have unfolded and measured our resolve and determination to fight for our son. The depths of patience and sanity plunged to new levels. Please join us in supporting Brando's journey towards healing, growing and a brighter tomorrow. Your contribution will help ease the financial burden on his family associated with Brando’s care. Together, we can make a huge impact on this brave boy's life.

Your donation will support: overnight nurses to sleep with Brando at hospital instead of one parent, babysitters, as of Thursday we don’t have one anymore she got a job at a kindergarten. At home physical therapy so he can strength train and walk asap. Second, third, fourth opinions from world famous institutions like Boston Children’s Hospital and the Cleveland Clinic. Just about $1000 gets a second opinion from Boston with their department specialists. Drivers license to move my children around, visit my wife and son at hospital, run errands, and to doctors appointments. We would also explore personal in-home nursing care options. The option to travel for a procedure isn’t out of the question if it came to it. We’ve accepted the possibility that we may need to sell our house to pay. Currently, when my wife is free from work or caring for our children she handle errands. I am a full time stay-at-home-dad that can’t ulegally drive or drive manual which I have to learn. Our children do not attend preschool to prevent exposing Brando's fragile health to additional risks and burdens.