Jacob and Lulu’s Story

On May 21st, 2021 our beautiful daughter was born, the moment she was born we had a profound feeling that took over and we knew our lives had changed forever. Now we have this little girl who depends on us in a way that nobody other than your child ever could. This feeling makes you feel your child’s pain and joy deeper than you ever felt anything for yourself. Which made it all the more painful when we found out she possibly had a medical condition that we were not expecting or made aware of. She was born very jaundiced and after so many heel pricks and doctor’s visits, her doctors suspected something other than regular jaundice. We got admitted to MUSC Children’s Hospital in South Carolina at her 7 days of life and that was the first time we felt the unimaginable pain of seeing our newborn baby getting a needle jammed into her tiny arm. After a few days, countless IVs, different tests, and a biopsy of her liver she was diagnosed with Biliary Atresia. Biliary atresia is a rare liver disease that happens to 1 in every 15,000-20,000 babies, it occurs when the bile ducts are either not formed or formed incorrectly. This causes bile to build up and remain in the liver, causing cirrhosis (scarring) of the liver and starts to destroy liver cells rapidly.  They rushed her into surgery at just 19 days old where she got a Kasai Procedure done. From that moment on she has been monitored by a team of amazing doctors who required regular blood work & tests to make sure her Kasai procedure was working properly. Over the last almost three years she’s experienced more pain and suffering than any 2-year-old should ever go through but thankfully she has been stable with her native liver. We moved to Northern California in May 2023, because of military relocation and have been receiving care with another set of amazing doctors at Lucile Packard Children’s Hospital. More recently she was diagnosed with Xanthoma Fatty Deposits, which is a skin condition in which certain fats build up under the surface of the skin and can be linked to cholesterol/triglyceride abnormality. These bumps cause excruciating pain anytime they are irritated and as a 2-year-old they get irritated quite regularly. Her new team at Stanford promptly diagnosed her with high cholesterol in the liver, which is another rare condition that comes along with liver diseases and can be fatal. Jacob went through testing with the Living Donor Team at Stanford and we found out that he is the perfect match and will be donating part of his liver to Amelia. She has never been able to live a truly normal childhood and our hope is with this transplant she will finally be able to experience the childhood that she has been deprived of. All of this is why we are so thankful to have become a part of the COTA family to help us get through such a stressful bittersweet time. Thank you to all who have taken the time to read our story and for donating to our baby girl. God bless you all!

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.