Birth Date - June 14, 2011
Diagnosis - Pericardial Effusion & Hirschsprung Disease
Shortly after birth Addyson started going limp and turning blue. After multiple stays at a local hospital she was admitted to Hopkins. There we started to get some answers. She had lung concerns, a hole in heart and fluid around her heart. With meds we were able to take her home. Things went well until at 9 months old she seized, and was rushed to hospital. For the next few months she continued with fevers and seizures. She was finally given a diagnosis of Periodic Fever Syndrome.
After the diagnosis, she had some relief until the fevers returned. Finally she was accepted into a clinical trial at NIH. That worked well for a year but again she started with breakthrough temperatures. New meds were given to her that had to be delivered by IV. Considering the side effects, it was determined to pull her off all trials for now.
Over the past year she has been sedated multiple times for procedures/surgeries and biopsies to figure out GI issues. For the past few months it's been daily colon protocol at home that is so painful for her. She is scheduled for a major procedure on 10/23/17 to remove the bad part of her colon, hopefully reattach the good areas, and provide her with a cecostomy button. Hopefully she will be able to leave the hospital in about a week.
"Addyson has been snuggling with her Love Quilt all morning. She LOVES it!! THANK YOU SO VERY MUCH!"