Like most parents, going in for our 20-week sonogram was an exciting time.  During that process, the technician found some abnormalities, which lead to frequent sonograms to make sure the baby was growing and progressing like he should.  During the sonograms, they found that my amniotic fluid was low, which was causing Jaxon’s heart rate to drop.  Jaxon was born at 29 weeks with a laundry list of medical problems, such as anemia, low platelets, adrenal insufficiency, hypospadias (and other urological problems), laryngeal cleft, chronic diarrhea, and had frequent infections.  Jaxon would spend the next 4 months in the NICU, and after that for several years he would be admitted in the hospital for various infections.  When Jaxon was 6 years old, he went into bone marrow failure. He received a successful bone marrow transplant with his sister being the donor.  In 2016, a doctor in Japan discovered MIRAGE Syndrome, which is a rare mutation of the protein SAMD9, which has helped explained Jaxon’s wide variety of medical problems.  6 years ago, March 2015, Jaxon was diagnosed with kidney disease of FSGS (Focal segmental glomerulosclerosis) and high proteinuria.  Since August 2020, Jaxon’s kidney disease has steadily deteriorated and he is currently waiting for a kidney transplant. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Jaxon.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.