According to a story on msn.com, Alijah Cunningham is living with the rare disease Apert syndrome, resulting in the bones of his toes and fingers fusing together. Now three years old, his parents are seeking monetary support so that he can get the treatment that he needs. His parents, Sarah and Andy, were taken completely by surprise by the diagnosis when he was born.

About Apert Syndrome

Apert syndrome is a genetic disorder that is defined by deformations of the hands, feet, face, and skull. The disorder is classified as a form of acrocephalosyndactyly, a group of conditions affecting the skull, feet, and hands. Apert syndrome is typically the result of a sporadic mutation; most often, the gene FGFR2 is affected, though others have been identified as well. A person affected by the syndrome has skull sutures that begin to close too soon, when the brain is still growing (a condition called craniosynostosis). Other symptoms include syndactyly (deformations and fusions of the finger bones), dental abnormalities, and, more rarely, omphalocele. Surgery is necessary to prevent the early closure from impairing the development and growth of the brain. This can be fatal over time if left untreated. While there is no standard approach, surgery is usually conducted on the hands and feet to enable more movement and usability. Unlike many rare diseases, Apert syndrome is usually easy to diagnose because of the distinctive physical characteristics. To learn more about Apert syndrome, click here.

Alijah’s Story

While it was clear from the time of Alijah’s birth that something was wrong, it took eight days for the parents to get the confirmation that he had Apert syndrome, a disorder impacting just one in 88,000 births. Alijah has already received multiple surgeries and spent the first few months of life in a hospital.

Despite these challenges, Alijah’s parents say that it hasn’t slowed him down, and that he’s a lot like any other kid:

“He’s never skipped anything. He plays just the same as all the other kids. He’s just as weird as all the other kids and he’s just as fun as them. It’s okay to be different. We’re all a little different. We’re all a little strange. And that’s what makes us special.” – Sarah, Alijah’s mother

To help support Alijah’s treatment, click here.