COTA for Sophia's Story

Our Story

Sophia’s story is one in the works. We know her beginning and how we got here; the question is, what’s next?

Sophia’s Great Grandma loved the poem The Dash; it talks about everyone having a beginning and an end, but what really matters is the dash in between the dates.

Sophia’s beginning is a little tragic…

Sophia was born premature and started life in the NICU. She went undiagnosed even for the common reason for the yellow tones in her eyes and skin. It wasn’t until her 3-month appointment and the 4th doctor that someone listened to my concerns and a workup was ordered. Blood work showed elevated liver enzymes. The physician told us to get to an ER! After a long few nights and 3 hospitals later, Sophia was diagnosed with a rare liver disease that begins in utero: Biliary Atresia.

At 4 months a Kasai procedure was done on Sophia with hopes to postpone the inevitable, a liver transplant. It worked! The yellow was gone, her bright personality arose. She started to flourish.

A couple weeks later the yellow crept back in and her energy levels dropped. She began to become clingy and startled easily.

Since then, Sophia has been in and out of the hospital battling colitis, ascites and weight loss. With the yellow returning it was apparent her liver is too far damaged. A transplant is needed sooner than we anticipated. Sophia was listed for a new liver within a week.

At 6 months we were informed that an anonymous donor was a good match for Sophia providing she remains as healthy as possible and gained weight.

Though Sophia’s story is still being written and is beginning to turn around, we ask for your help in making her dash memorable and full of adventures. Sophia will have lifelong medical expenses and possibly will need another liver because she is so young. Your donations to COTA for Sophia’s Story will assist with transplant-related expenses so she can worry a little less.

Thank you for reading her Story this far…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.