Tinley’s Story: Diagnosed at Birth with Apert’s Syndrome

Tinley was born with Apert’s syndrome, a rare condition in which the child’s bones fuse in the womb. Most critically, the bones of the skull fuse prematurely, preventing the head from expanding during the child’s early years, when the brain ordinarily triples in size.

As soon as doctors diagnosed Tinley with Apert’s syndrome, her family had to consider where they could find treatment, looking at centers as far away Texas. Fortunately for her family, their doctors recommended the Craniofacial Center at the University of Illinois at Chicago, whose expert staff works mere minutes away from their house.

By the time she was five months old, doctors at the Center had completely restructured Tinley’s skull in a 12-hour procedure, leaving her brain enough room to grow. Since then, additional surgeries have started to fix the joints in her fingers and toes, allowing more normal movement and opening up new avenues of communication. She has recently begun learning sign language and—even while recovering from her finger surgery—she has already mastered more than 30 signs.

Though she has more than 20 years of surgery and therapy in front of her, Tinley today is beginning to thrive, thanks to the efforts of the Craniofacial Center. She enjoys reading, dancing, and listening to music, embracing the quality of life that the Center has given her.

Face the Future Foundation is vital for children like Tinley. With the financial resources raised by the Foundation, the Center is able to provide these children with the care they need, freed from the constraints of insurance or state funding.