Steve reflects on his experiences with SMA during his childhood

Steve reflects on his experiences with SMA during his childhood

Living with SMA

The severity of Spinal Muscular Atrophy (SMA) symptoms varies – some people can move, eat and speak more easily than others. Importantly, children with SMA have normal intellectual and emotional development.

Disease Progression

People with SMA either never acquire, or progressively lose, the ability to walk, stand, sit and even move. The severity and rate of disease progression varies greatly depending on SMA type.

  • Dr. De Vivo describes the disease progression for different SMA types
  • Esther and Frank describe their daughter’s progression since diagnosis
  • Debbie and Ron talk about the experiences of their son with Type II SMA
  • Steve reflects on his experiences with SMA during his childhood
  • James talks about his family’s experience grieving for his son, Leo

Day to Day Life

SMA can affect all aspects of daily life, including routines, school, sports and careers. Children with SMA, and their siblings, also develop an understanding of the condition.

  • A typical day in the life of 2 year old Maeve
  • Ron and Debbie describe Dylan's daily routine
  • Steve talks about life with mild SMA, from high school, to college, to his law career
  • SMA parents Ron and Debbie describe their children’s understanding of SMA