I will run a half marathon in honor of my niece who is not able to take a single step.

My niece Teagan is a loving, sweet, and beautiful little girl. She struggles everyday with a body that does not allow her to do the things she wants to do. Teagan is not able to talk, she cannot walk, and she often struggles with eating and sleeping. The basic things you and I take for granted everyday, Teagan cannot do.

I was so excited when my sister told me she was having a little girl and I dreamed of everything we would do together. Once Teagan was about one year old, it became clear that something was wrong. After many doctors appointments and months of tests, the devasting news came that Teagan had Rett Syndrome.

Rett Syndrome is a debilitating disorder that affects the motor systems of the body. There are many symptoms, which include Apraxia (the inability to control the muscles used for speech), seizures, loss of purposeful hand movements (ie. grasp used to pick up small objects is replaced by repetitive hand motions like hand wringing or constant placement of hands in mouth), rocking, problems with digestion, and the list goes on and on. Although most children survive to adulthood, many are wheelchair-bound, rely on feeding tubes, are unable to communicate and require total, lifelong care.

There is promising research being done but the Rett Syndrome Research Trust needs more help. That is where you come in! Please donate whatever you can to help them find a cure for this terrible syndrome that has taken Teagan's ability to live a normal life.

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Organization Information

  • Name

  • Phone

    904-875-4810
  • Address

    2891 BREAKERS CT
    AMELIA ISLAND, FL 32034
  • EIN

    208011668

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