Sydney’s Story

After having her daughter Sydney, Sarah’s life took an unexpected turn. Sydney was diagnosed with a rare genetic disorder called Urea Cycle Disorder / Ornithine Transcarbamylase deficiency (UCD/OTC) at just one year old. Despite her initial symptoms appearing at birth, her condition’s rarity left their local medical community in Texas unaware of its implications. After a year with no answers, Sydney’s family finally found the National Urea Cycle Disorder Foundation (NUCDF), which led them to UCD specialists within the NUCDF Consortium of Doctors in Texas.

Connecting the Dots to Sydney’s Care

At the heart of Sydney’s condition lies a missing enzyme in her liver, preventing her from converting nitrogen to urea. This metabolic glitch results in the accumulation of toxic ammonia in her bloodstream, which, if left untreated, can lead to severe consequences such as brain damage, coma, and even death. The grim reality is that there is no cure for UCD, and one of the only pathways to a better quality of life is a liver transplant.

Sydney’s journey to UPMC Children’s Hospital of Pittsburgh was pivotal in her battle against UCD. In 2019, the transplant team from UPMC Children’s attended a family conference on UCD. Sarah realized that UPMC Children’s was the perfect fit for Sydney’s care.

The Clear Choice: UPMC Children’s

At any given moment, nearly 2,000 children await the life-changing news of a compatible donor organ. UPMC Children’s Hillman Center for Pediatric Transplantation stands as a beacon of hope on the transplant journey. For more than 30 years, UPMC Children’s has performed more than 3,200 pediatric transplants, making it the unrivaled leader in transplantation research and practice for children.

Living with a UCD meant that Sydney could never stray too far from a hospital. High ammonia levels could trigger a crisis at any moment, making proximity to medical care a necessity. UPMC Children’s Genetics Department, with its well-established policies and procedures for managing ammonia crises through the ER, provided the family with the assurance they needed to make the journey to Pittsburgh for Sydney’s transplant.

Landing in Pittsburgh

Upon arrival, Sydney and her family found not just medical care but also a support system that would become an integral part of her life. The Complex Care department welcomed her as a patient for the duration of her stay. Additionally, speech therapy, occupational therapy, and physical therapy departments all contributed to her well-being, making her stay in Pittsburgh more than just a medical procedure — it became a journey of holistic care.

Sydney underwent her liver transplant in May, but her path was far from ordinary. A rare complication kept her in the hospital — more than 1,100 miles — from home for a staggering 100 days. Throughout this trying period, every department involved in her care provided unwavering dedication.

A Special Place Away from Home

Her family couldn’t praise the nursing staff at UPMC Children’s enough. “The nursing staff at UPMC Children’s is absolutely the best,” says Sarah. “The day-to-day care inside of the hospital was the best care Sydney has received. There’s something about the environment here that is very special.”

Sydney’s journey was not only about medical treatment but also about emotional support. The Child Life department, along with the music and art therapy departments, played a pivotal role in helping her navigate her feelings during tough times. Every person assigned to Sydney’s case within these departments showed kindness, expertise, and compassion, making her feel special.

“They never make you feel like a sick kid,” says Sydney.

Sydney’s story is featured as part of DVE Rock’s Children’s Radiothon. When you become a Platinum Rockstar with a $20 monthly gift, you support every kid like Sydney in achieving the healthy future they deserve.