Sarah Vargas, and her husband, Tony, are true Power Players in our eyes. Their daughter, Rosalina, was born with Maple Syrup Urine Disease (MSUD), which was discovered when she was four days old through newborn screening. At just 11 days old, the couple came close to losing their daughter. After that, they vowed to do everything they could to keep her safe and healthy.
When Rosie was nine months old, she received a living liver transplant from a relative. Unfortunately, she was faced with complications from the transplant. Although her doctors attempted to treat the complications, the family later found out that another transplant was necessary. In December 2016, Rosie was placed back on the waiting list with 1B status.
When Sarah and Tony found out about the new transplant that Rosie required, the family left their support system in California and moved to Pittsburgh so that Rosie could be treated at the Children’s Hospital of Pittsburgh. Luckily, Tony was able to make the transfer through work so the family could keep their well-needed health insurance.
The move has certainly been an adjustment for the family, but Sarah said she’s happy they moved. Rosie is receiving the best care, and that’s what matters. The original plan was to stay in the Pittsburgh area for a year or two, but the family has decided to stay.
Unfortunately, the Vargas family is still waiting for Rosie’s new liver, so their journey continues. It has been a difficult few years, but Sarah and Tony are determined to advocate and make the best out of a bad situation. Sarah hopes that their story helps others. She spoke at a Donate Life event and is trying to spread the word as much as she can, especially since Rosie’s disease is rare.
“I want Rosie to see how we made transplant into something positive. How when we advocate and educate we can save lives. In sharing her story, we have already received feedback about a family deciding to donate organs. Friends who have become registered organ donors because of Rosie. I know the power of sharing a story,” Sarah said.
Through all the heartache, they are determined to give Rosie the normal life she deserves. She is now in daycare, attends swim classes, and recently had a birthday party.
Are you interested in sharing your story? We’d love to hear from you! Contact sobrien@myAST.org for more information.
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