AFM Stories

If you’re facing the extraordinary challenges of AFM, know that you’re not alone. CDC is sharing stories from families affected by AFM to help others who have received an AFM diagnosis. In each story, you’ll learn about a family’s experiences, progress, and advice to others.

Francisco smiling in his power chair.

Francisco’s Story

Francisco loves sports, playing with friends, and learning new things. With the help of his power chair, he’s living an active life in Albuquerque, New Mexico.

Lauren smiling with a small frog on her shoulder.

Lauren’s Story

Lauren’s parents say she works harder than anyone they know, which has helped her make excellent progress in her recovery from AFM.

Jack smiling from his wheelchair.

Jack’s Story

Jack loves fishing and video games, and his parents say he talks a mile a minute. Four years after AFM led to paralysis in all limbs, he is steadily regaining movement.

Kinley smiling in her glasses.

Kinley’s Story

Kinley is a gifted artist who has become quite skilled at painting, doing schoolwork, and playing video games with her right foot.

Terrance zip lining.

Terrance’s Story

Terrance enjoys basketball, video games, playing oboe in his school band, and learning about architecture and interior design.

Laura smiling in front of a house.

Laura’s Story

In 2014, Laura experienced paralysis in all four limbs and her trunk. She’s made extraordinary progress and is now back to dancing, playing softball, and running races.

Alex smiling.

Alex's Story

Alex passed away at 6 years old, a year and a half after developing paralysis in his arms, neck, and diaphragm. His family honors his memory through their work helping other families affected by AFM.

Emma sitting on the beach with her dog.

Emma's Story

When Emma developed AFM at age 14, she lost feeling and movement in both arms and both legs. Through treatment and hard work, she has made excellent progress.

Kevin looking over a mountain view.

Kevin's Story

When he developed AFM, Kevin retired from a 34-year career in education to focus on his recovery, with the support of his wife Barb, three adult daughters, and two grandchildren.

Sarah standing in front of a black concrete block wall

Sarah's Story

In her senior year of high school, Sarah was busy rehearsing a theater show and singing in the choir. When she developed AFM, she experienced rapid paralysis and lost her voice. Through intensive therapy, she’s made excellent progress.

Noah smiles outside

Noah's Story

When he was 6 months old, Noah developed AFM and paralysis spread quickly through his body. At age 6, he is living an active life and looking forward to being a big brother soon.

Kaitlin at home

Kaitlin's Story

When she was 7, Kaitlin developed AFM and experienced paralysis in both arms, her neck, and her diaphragm. At age 13, she can breathe without assistance and has regained some movement in her arms.