10/29/2025
"Sky was diagnosed with a rare liver disease called Biliary Atresia. With no current cure for this disease, she had a Kasai procedure done, which reroutes the GI system in hopes of a better flow of bile. Despite the operation, doctors explained that a liver transplant could still be necessary in the future.
"Once she was about 5-6 months, her GI doctor decided it was time to start the workup for transplant. My daughter's health reached a point where she could no longer stay home due to liver failure, and she was admitted to the PICU at Johns Hopkins and was placed on the transplant list.
"It had been 45 days since she was listed when one day, her doctors came in and said they found a match for her. But after her transplant, she went to the OR 5 times within 2 weeks, had a chest tube placed, and had 2 code bells ring throughout the halls of the PICU.
"After 4 weeks of a bumpy rollercoaster, when the day of discharge finally came, our social worker, Erica, came to our room and told us that Sky had been admitted for exactly 100 days.
"It has now been almost 3 years since her liver transplant, and she is as healthy as can be. She runs, jumps and plays with no limits. She has such a boldness inside of her that she isn't hesitant to bring out. She is fearless and ready to take on anything. She graduated from her therapies and met her nutrition goals. She went from 11 medications to now only 5 medications. She went from lab appointments twice a week to labs once a month. She went from having GI appointments every week to now every 5 months.
"The light was there the whole time. The light was at the beginning of the tunnel, in the tunnel, at the end of the tunnel, and was also there waiting for the next tunnel." – Sky's mother, Paris.
