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June 23, 2018  |  By Beth Vannoy In Minutes Matter - MCADD

Inspiration for Living with MCADD

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I recently received an email from Taylor D. with an amazing story to tell.  Taylor was born in Nebraska in 1996, before all states in the United States tested for MCADD through Newborn Screening.  She wasn’t diagnosed with MCADD until age 2.  Taylor’s mom couldn’t get her to stay awake in the morning, and she was rushed the ER.  The doctor that she saw in the ER that day had recently attended a seminar to educate on MCADD.  Taylor was tested for MCADD because of the physician’s recent education on the disorder.  Yet another reason that our organization and its mission is so important.  Education and Awareness of this #RareDisease are essential!

Taylor shared her story with us to remind us that living with MCADD “does not stop your child from living his/her best life”.  Taylor was very active throughout high school, and she recently graduated from Iowa State University.  She was active in the College of Agriculture as well as the Greek Community while at Iowa State.  Recently, Taylor married her husband, who she met in college and they live in central Iowa.  (Congratulations, Taylor!!).

Taylor struggles at times with exercise, heat, and sickness, but on the whole, she has been able to live a very adventurous and high energy life.  You are truly an inspiration, Taylor.  Thank you for sharing your story….God Bless! 

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We are a non-profit organization dedicated to saving the lives of newborns by advocating to prevent delays in the detection of MCADD through timely Newborn Screening, by raising awareness of the disorder through education, and to offering a community of support for those diagnosed with and affected by MCADD.

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