Sweet Harley Jean was born on December 25, 2022 – our greatest Christmas gift ever. Almost immediately, doctors realized that something was wrong when Harley’s blood tests showed elevated levels of bilirubin.  Harley underwent daily blood tests, an ultrasound and an MRI before doctors confirmed that Harley did not have a biliary tree or a gallbladder and, therefore, was diagnosed with Biliary Atresia, a fatal illness that only affects newborn infants.  The purpose of the biliary tree and gallbladder is to help humans drain bile and waste from the liver, and without these vital organs, children with Biliary Atresia can be jaundiced and very uncomfortable. A Kasai procedure was unsuccessfully performed when Harley was five days old, and now she will need a transplant to save her life.

Harley’s fighting spirit was evident from her first moments and, in spite of all expectations, she was even able to put on weight successfully for a while.  Unfortunately, once she turned five months old, she stopped gaining weight and signs of her illness were on full display as she was hospitalized again and again, battling infection, imbalanced electrolytes, ascites (fluid in the belly) and then finally having an NG tube and PICC line inserted to help her put on weight.  In order for Harley to have a fighting chance, a transplant is necessary sooner than later and even then, Harley has a long road ahead of her.

Transplant comes with a lot of risks, and she will require intensive medical care the rest of her life including numerous medications, an increased amount of doctors’ appointments, and access to specialists.  The funds raised for COTA in honor of Harley will assist with a lifetime of transplant-related expenses ensuring that the cost of care will not prevent her having a good quality of life.  In addition to medical expenses, COTA will assist with household expenses as Harley’s mom is required to take unpaid time off from work to ensure Harley’s best possible care during what is the most important time of Harley’s life.  Our Harley is a fighter, and we will not rest until she has the transplant she needs.

Thank you in advance for your contribution to COTA in honor of Harley.  We cannot express our gratitude enough.

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.