“Sweet Odyssey”: The Santos family’s inspiring journey from a rare disease diagnosis to the cure

A CSC patient family, Idario Santos and son Vinicius were recently interviewed by KDKA out of Pittsburgh, Pennsylvania about their inspiring book, Sweet Odyssey, in which they tell the story of Artur Santos’s (son to Idario and brother to Vinicius) incredible journey living with Maple Syrup Urine Disease (MSUD). Their book walks the reader through Artur’s diagnosis with MSUD, the Santos family’s partnership with the Clinic for Special Children, Artur’s liver transplant surgery that saved two lives, and his eventual cure from this previously incurable rare genetic disease. This book serves as a testament to the amazing results that are being achieved every day due to recent medical advances made in the treatment of rare genetic disease and reinforces the specialized role CSC plays in genetic disease management, serving patients across the whole world.

50% of the proceeds from “Sweet Odyssey” will be donated to the Clinic for Special Children.

“Sweet Odyssey” is available for purchase in Portuguese and English.

Learn more about their book here: http://www.sweetodyssey.net/

Watch the interview here:

NPR Special: Science and Religion (featuring the Clinic for Special Children)

National Public Radio (NPR) featured the Clinic for Special Children in a special program that investigates the unique roles science and religion play  in modern medicine across different populations, including Amish and Mennonite communities. A Mennonite patient family seen at CSC, the Leinbach family, talks about their emotional journey through their daughter’s diagnosis with Maple Syrup Urine Disease to her treatment and participation in scientific research studies. Starting at 17:20 – 24:30, listen to Dr. Kevin Strauss (CSC medical director) and Adam Heaps (CSC executive director) talk about how CSC works to bridge the gap between science and religion in the Plain population, bringing critical medical and technological services to an underserved population.

CSC Featured in Lancaster Physician Magazine for Partnership with WellSpan Philhaven

Clinic for Special Children was featured in the Fall 2017 issue of Lancaster Physician Magazine for our partnership with WellSpan Philhaven in providing therapies for children who suffer from behavioral health challenges, many times coinciding with an underlying genetic condition. We partner with Dr. John Dolena and psychologist Jennifer Hailey, both pictured above in a photograph from Lancaster Physician’s article, to help children and families build the skills necessary to cope with and overcome behavioral issues or development delays. Read the article here on pages 10 and 11!


Lancaster Physician Fall 2017