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2-year-old undergoing experimental therapy defies the odds

Pioneering #GeneTherapy Tackles a Deadly #RareDisease |  #SNRTG #BigData #genomics #science

  • “Probably after her first birthday, we were really optimistic,” Johnson said.
  • Last year, The Dispatch wrote about Tenley on her first birthday .
  • Tenley is undergoing experimental gene therapy for spinal muscular atrophy.
  • And there was Lacretia Johnson, posting early-morning birthday wishes for her miracle baby on the Team Tenley Facebook page: “You did it!
  • Enlarge Image Request to buy this photo Barbara J. Perenic | Dispatch Tenley Johnson celebrates her second birthday with a cake in her hospital bed at Nationwide Children’s Hospital.

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@Primary_Immune1: “Pioneering #GeneTherapy Tackles a Deadly #RareDisease | #SNRTG #BigData #genomics #science”


Tenley Johnson turned 2 recently, and for her, it was probably no big deal. A room of people sang to her. Balloons bobbed around her tiny body. She slurped on a stick of candy nearly as long as her arm. There were presents and cake and sparkly shoes. But her mom sat just a few feet from the girl’s hospital bed on June 17 and said what a lot of people were thinking: “It’s a huge deal.” Lacretia Johnson has heard more than once that her young daughter was going to die.


2-year-old undergoing experimental therapy defies the odds

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