Marley Nibecker Robinson, Age 14
Mystic, CT

Home and Family

Marley lives with her mother Gabrielle and father Karl. She has an older brother named Cooper and loves all of her pets. Marley has a dog, a rabbit, two ducks, & three chickens.

Diagnosis

Marley has Spinal Muscular Atrophy II and was diagnosed when she was 1 year old. Spinal muscular atrophy (SMA) is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The age at which SMA symptoms begin roughly correlates with the degree to which motor function is affected: The earlier the age of onset, the greater the impact on motor function. The biggest potential problems in SMA are respiratory muscle weakness, swallowing muscle weakness, and back muscle weakness with progressive spinal curvature.

School

Marley is a currently a freshman in high school. Her favorite classes include: English, French, and Computers.

Interests

Marley loves reading and art and is a member of a Photography Club. She also volunteers for children’s art classes at the Mystic Arts Center.

MDA Activities

Marley has attended MDA Summer Camp. Her family volunteered for numerous years at the CT MDA Telethon held at Mohegan Sun. Marley has visited and presented for the firefighters at the Old Mystic Firehouse. She is also an ambassador child for the MDA Clinic held at the Yale Pediatric Clinic.