COTA for Team Winston

Our Story

Winston was born with Alagille Syndrome, a rare genetic disorder that can impact the body in many ways, including the liver, heart, vascular system, growth development, and more. Our
journey to discovering this diagnosis was not an easy one, as symptoms were not present right at birth.

Our lives forever changed the day we took him to his 2 month wellness check in Sept 2020- slight yellowing of the eyes and poor weight gain gave us a one way ticket to the ER and a transfer downtown to Childrens Pediatric Liver Center once abnormalities were confirmed. We didn’t know that would begin a 23 day hospital stay, where imaging tests, labs, procedures, and biopsies had doctors quite perplexed, as Winston’s case pointed to multiple potential
diagnoses. He needed a genetic test to verify what was wrong, but results take 4-6 weeks. Due to the time sensitive nature, the consensus was to treat Winston for what was likely Type 2 Biliary Atresia. This treatment was the Kasai Procedure, which can be a life-saving surgery for newborn children failing to thrive from the dangerous amount of bile build-up and inability to flow due to the absence/narrowing of bile ducts. 

At 12 weeks old, Winston had the Kasai Procedure (where gallbladder is removed where the liver is directly attached to the small intestine) and although the surgery went well, it ultimately was ineffective. We realized weeks later after his genetic test results arrived, and Alagille Syndrome was confirmed, he was going to need a long-term treatment plan.

The journey since then has had some wild ups and downs and has created a different
‘normal’ for our family. Winston continues to take 8+ different medications and supplements
every day. The build-up of liver enzymes in his body creates another condition for Winston called Pruritus, which is an intense itchiness from the inside out. We started a new trial drug created just for this condition in November 2021, which has helped to some degree, but has not provided the relief we hoped for. Because his liver is unable to break down and absorb fat and fat-soluble vitamins, weight gain is a significant struggle. So much so that for the last 8 months he has to use an NG feeding tube. The tube has been life-saving in helping Winston gain weight and grow, but it comes with its own set of unique challenges.

We’ve also navigated other unexpected complications that can happen with these vitamin deficiencies, including bruising, bleeding, and bone brittleness, which led to a Femur fracture in May 2022. Despite our best efforts to stabilize and maintain his condition, his liver function
continues to worsen and has not been able to make improvements.

In April 2022, our care team decided it was time to pursue the route of transplant evaluation; we finished the evaluation on his 2nd Birthday, and his case was accepted not long after! We are extremely grateful for our amazing doctors and nurses taking us through this journey hand in hand. We know this is his best shot at giving him the quality of life he deserves, and we remain hopeful. Winston has the most resilient, adaptable, sweetest disposition. Despite everything he has already endured in this life, he stays so happy and smiley. We couldn’t have gotten this far without our amazing families’ and friends’ support. Thank you to all who have come alongside us to help care for our sweet boy in so many ways. We are extremely blessed and fortunate.

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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.