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When 9-month-old Koda stopped using her legs and began losing muscle tone, her family and a team of specialists at Geisinger Janet Children’s Hospital started searching for answers. Genetic testing found that Koda had spinal muscular atrophy, or SMA, which affects the central nervous system and results in the loss of nerve cells in the spinal cord. It comes from a deficiency of protein in the genes and can be fatal.

Geisinger’s team of pediatric neurologists recommended a type of gene replacement therapy that could save Koda’s life. While they waited for FDA approval of the therapy that could replace the proteins in her genes, spinal injections kept her disease from progressing.

As soon as the medication was approved, the neurology team ordered a dose to be delivered to Koda in Danville. Three weeks before her second birthday, she received the medication that may have saved her life.

Now 4 years old, Koda enjoys arts and crafts, playing with her dolls and watching her big brother play
football. Her strength and posture have improved and, she’s strengthening her legs and hips in the hope that she’ll one day be able to walk.

Donations to Children’s Miracle Network at Geisinger provided comfort items like recliners and rocking chairs for Koda and her mom during long treatments at the hospital. Generous donations have also provided the Child Life team with toys and other distractions used when she received her treatments.
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