Edie the Extraordinary

Edie Rose O'Neill made her extraordinary debut into the world on 10/10/19! When she was born, no one could believe how much gorgeous hair she had or how loud this little peanut could scream. 

When Edie was 10 days old, it was noted that she had jaundice which makes her skin and eyes appear yellow.  Blood tests showed that Edie has a more unusual condition known as conjugated hyperbilirubinemia and she was quickly admitted to the hospital where Bridget & Justin learned that Edie's liver was not functioning normally and that her condition was much, much more serious.

At 1 month old, Edie's health had further declined and she was admitted to The Children's Hospital of Philadelphia (CHOP) for a full evaluation. Test after test ruled out many of the different known liver conditions and her team did not know what was making her sick. Ultimately, Edie was sent home to wait and see what would happen. Our extraordinary little girl continued to thrive meeting each milestone including smiling, cooing at EVERYONE, and grabbing for her hundreds of toys. However, Edie also continued to struggle. She was not gaining weight well, was often sleepy, and her lab work continued to be alarming to her doctors. 

Her extraordinary medical team at Jersey Shore University Medical Center: Dr. Jen Jimenez, Dr. Ann Ross, Dr. Reena Jethva, Michele H. - Genetic Counselor, and Nurse Mary Jo tracked her by examining & adjusting her medicines every week. Her extraordinary lab team at Riverview Medical Center  Laurie, Lisa, Monica, Amber, Nicole, Ruthie, and MJ drew her blood weekly and kept worried Mom, Dad, and Grandma Kiki in the loop with what was ahead. 

On Saturday, 1/11 Edie quickly deteriorated and was taken to the ER at Jersey Shore where she was airlifted (Edie's 1st helicopter ride -- check!) to CHOP. She is being treated in the Pediatric Intensive Care Unit (PICU) and remains in serious condition. Right now, a team of over 30 doctors & nurses are working around the clock to stabilize Edie who is experiencing acute liver failure. We hope and pray to get her healthy and strong enough for a liver transplant very soon.

The money raised through this GoFundMe campaign will be used to support Edie, Bridget, Justin and their family with all of Edie's medical expenses and the expenses related to a prolonged hospitalization far  from home. Bridget is taking an unpaid leave of absence from work and Justin has been a stay-at-home dad taking care of Edie around the clock. Family has been coming into town to help support and keep Edie company at her bedside 24/7.

Edie is an extraordinarily little girl and we believe that she will not only get her miracle, but that she will thrive and be even stronger than any of us think possible. She has the most EXTRAORDINARY family & friends in the world and for that Edie is so very grateful.