COTA for Winnie

Our Story

Winnie has always been a rare girly. As early as her 12-week ultrasound, it was clear that something was different about her liver, too. Unfortunately, what was long diagnosed as a choledochal cyst, proved itself to be something far more rare in the form of a cystic variant of Biliary Atresia. This is a rare condition in which there is a narrowing and sometimes even an absence of functional bile ducts due to scarring or blockage that allow the liver to properly drain bile into the body. It’s a life-threatening condition that demands an intervention called a Kasai procedure in the first few months of life to relieve the built-up pressure and restore some function to the liver.

Winnie received her Kasai at just 57 days old. Unfortunately, this procedure is rarely a long-term fix and Winnie is now one of the 70%-80% of Kasai kids who ultimately need a liver transplant. Winnie just needs her new liver sooner than most. And that means the hospitals where her journey started (Children’s Medical in Plano and Dallas) could never be the ones where her transplant could take place. Fortunately, Texas Children’s Hospital in Houston happens to be the #1 Pediatric Liver Transplant Center in the country. Winnie’s journey continues there. In some regard, it will continue there for the remainder of her life. Once she receives her new liver, Winnie will remain in Houston for a few months for post-transplant follow up with her surgical and hepatology teams at Texas Children’s. Upon her eventual return back home, she will go on a lifetime regimen of daily immunosuppressive medications to keep her body from rejecting the donor liver her body so desperately needs.

But Winnie’s story isn’t just about her. She’s always been surrounded by a community who has had her back, ready to fight and pray for her whenever and wherever necessary. And her family is ever grateful for every bit of the love and care y’all have shown them so far. Be it through constant prayer or a gift card, you have shown up and have shown Winnie and her family love. But this journey is far from over. As her family looks at the mounting costs incurred by transplant, the demands of living far from home and their community, and the reduction in wages – their need for assistance persists so her family has decided to partner with COTA. Going forward, if prayer is your only means of support, that’s enough. But for those who wish to donate further to COTA for Winnie – be that through a one-time gift, the purchase of a t-shirt, or any other means – your gifts will go a long way in allowing COTA to create sustainability for Winnie and her family going forward.

The world needs rare folks, and Winnie just happens to be one of them. Thank you for being a part of her story.

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.