May. 14, 2015
Posted by Jennifer Huron
Yusuf Patel is a 12-year-old rare disease patient and advocate who is helping to save the lives of other children.
His journey began at 9 months old, on a flight home from India visiting grandparents. Yusef experienced a medical crisis that caused the plane to make an emergency landing in Turkey. The family stayed for two weeks until doctors diagnosed him with Methylmalonic Acidemia (MMA), a rare genetic disease caused by an enzymatic defect that alters the body’s ability to break down proteins.
The sudden and shocking experience struck the Patel family into action. Because of their efforts, Delaware now screens for MMA as part of its newborn screening program.
Yusef has sought out other ways to make a difference for chronically ill children. After undergoing a kidney and liver transplant at the age of 10, he raises awareness about the importance of organ donation. He has also collected more than 1,000 books and distributed them to libraries at local children’s hospitals, saying “I have been in those hospitals, and libraries are huge for kids and parents who come to stay.”
In April, Yusuf was recognized for his numerous volunteer efforts in Delaware, where he lives. He received the 2015 Governor’s Youth Volunteer Service Award for Social Justice and Advocacy.
Yusuf believes “courage means you keep going even though there are so many challenges, and to always have a hope for a better future.” He is an example of using his personal struggles with illness as empowerment to help others.
NORD is honored to tell Yusef’s story as part of the 2015 Portraits of Courage celebration.