Fourteen and a half years ago, our lives were changed forever.  Our one week old baby girl was diagnosed with a disease that we thought was created in a novelist’s imagination.

We quickly learned that it was a very real, yet rare, disease that would nearly claim our daughter’s life.

Our daughter Anna was born with Maple Syrup Urine Disease, a strange name for a potentially fatal disease.  Since she was a week old, Anna’s life has been dictated by a very restricted diet, frequent blood tests, and constantly fearing elevated amino acid levels that lead to metabolic crisis.  Yet she has not let these challenges hold her back from her ambitions.

Anna competes in track and soccer through Special Olympics.  She also participates in the yearbook committee at her middle school, and volunteers at an equine therapy ranch.  She strives every day that although she may live with a rare disease, this disease will not keep her from enjoying life to the fullest every day.

Paula Ruter
Michigan

 

 

1 thought on “Maple Syrup Urine Disease – It’s Not Sweet”

  1. Tareq says:

    I wish you all wellness

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