Upon application, Scarlet was a four-year-old girl with a diagnosis of spinal muscular atrophy (SMA), a debilitating genetic disease. She is a bright and spirited young girl who is motivated to learn and grow each day. Her family was ecstatic when the FDA approved a new drug, Spinraza, for the treatment of SMA and saw a glimmer of hope for Scarlet’s future. She became the first child with SMA in the state of Michigan to receive the drug. Prior to taking the drug, Scarlet had no trunk or head control. She was using only one arm and could only use her hands to touch light objects because she was too weak to lift her arms. She spent her time in a power chair requiring a head sling to provide her with appropriate stability and postural alignment. Extensive therapy is required to enhance and build upon the drug’s effectiveness. The family applied and were denied extended treatment.
The Board of Directors of the Mary and Charles A. Parkhill Foundation for Spinal Cord Rehabilitation unanimously approved Scarlet for 12 Physical Therapy visits, and 12 Occupational Therapy visits.
Summary of Progress
Scarlet started therapy at The Recovery Project at the end of February 2016. At that time, she could not sit up on the edge of a mat, maintain head control, hold her Barbie doll, and barely move her legs. Today, Scarlet is sitting by herself, keeping her head up to look around, and can roll from her back to her side with increased independence. She is now able to utilize utensils to feed herself, kick her legs, take small steps in the Litegait harness and, of course, hold her toys – mermaids, fairies and dolls. She continues to exceed expectations every day!