Transforming Moments

Taylor’s Story

A Full Circle of Care

Less than two weeks after their daughter, Taylor’s, first birthday, Visha and Kenny received a phone call confirming what they had been told might be preventing Taylor from sitting, standing and reaching many other physical milestones; she had Spinal Muscular Atrophy Type 2 (SMA2).

A motor neuron disease that affects the voluntary muscles used for activities such as crawling, walking, head and neck control and swallowing, SMA is the number one genetic cause of death in children under age two. With approximately one in 40 people carrying the SMA gene, approximately one in 6,000 babies are affected with the disorder. Patients with SMA are grouped into three pediatric categories based on certain key motor function milestones with Type 1 being the most severe. Taylor was diagnosed as a weak Type 2.

“We were heartbroken when we received the devastating phone call from the neurologist,” Visha wrote on the family’s web site, “but are now trying to work our way through. She is such a sweet, happy and delightful little girl and that makes it a little easier for us to get through each day.”

When Taylor, the second of three girls, was born in August 2005, she appeared perfectly healthy. She rolled over before she was four months old, but soon after, Visha noticed that Taylor couldn’t support weight with her legs and had difficulty sitting up, even with assistance. The family’s pediatrician suspected that Taylor, like her older sister Brooke, had low muscle tone but would reach those milestones eventually. When Taylor still wasn’t sitting up at eight months, the doctor suggested a physical therapy evaluation at Children’s Hospital’s South Therapy Center.

“The physical therapist said she was performing like a 4-month-old in regard to physical capabilities,” recalled Visha. For the next four months, Taylor received weekly physical therapy and learned to sit unassisted.

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