Scarlett Rose Will Never Quit Hi, my name is James Connolly and I’m starting a fundraiser for my family and the medical bills we’re receiving from my 1 ½ year old daughter, Scarlett Rose Connolly. In May, me and Scarlett’s mother Stacey had our whole world change. Our fourth child, Scarlett, developed a fever for a few days and began throwing up. We rushed her to ER immediately that evening and after lab work her liver enzyme levels were extremely high causing liver failure. She was then transferred from Porter County to Comer’s Children’s Hospital for 8 days and had every test imaginable ran on her. We were told she needed a liver transplant, but we still never had a diagnosis on why this was happening to our healthy and happy baby so quickly. Frustrated and not knowing what the outcome would be we were recommended to transfer to Ann & Robert Lurie Children’s Hospital who had a special Pediatric Endocrinology and Genetic testing team. After spending another week at her third hospital, Scarlett with nothing but fluids and rest started to fight back and be her tough little self again. Still not knowing what was wrong, and why this happened, we were sent home. 18 days later, Genetics lab work showed us what has been going on. Scarlett has “NBAS” Neuro Blastoma Amplified-Sequence, a genetic mutation in the Neuroblastoma gene that any time she becomes febrile (with fever) from a virus or sickness it can trigger her to go into liver failure and require a trip to ER. Being our baby never really had a high fever and been that sick before, it never presented itself. A multitude of things can be affected with this, like the eyes, brain, spinal cord, bone precursor cells and her growth. We have four other children at home, now every time anyone isn’t feeling well it could be passed over to Scarlett and cause liver failure at any time now. Scarlett sees Hepatology Specialists, Endocrinology Specialists, Genetics and Ophthalmology Specialists alternating weekly, along with lab work to keep all her levels monitored constantly. We are doing our best to keep her immune system strong with vitamin supplements and a healthy diet to do anything to keep her from getting a transplant and, possibly grow out of this somewhat. Odds are next to nothing but someday it could happen. This is extremely rare and there’s so much constantly going through our heads under these circumstances and what tomorrow could possibly bring. Our family would appreciate prayers and your thoughts for us at this time and any contribution you could make to ease a little stress and give peace of mind as well. We have a long road ahead of us and if you would like, share our story, all the love and support is what Scarlett Rose needs and deserves. Make the best of each day friends and family, because who honestly knows what tomorrow will bring. Love, Jim, Stacey, Rory, Cora, Ireland, Savannah, and Scarlett Rose Connolly.
Artículos relacionados
