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The Joy of Life with Lucy: Redefining Rare Disease

Life with Lucy

When Lucy was born the doctor placed her on my chest and said, "I think she has Down syndrome." Our world changed for the better at that moment and we can't imagine a life without our Lucy. Lucy was also born with a congenital heart defect in the form of a large VSD (which is a hole in her heart). This hole was repaired through open heart surgery when Lucy was 5 months old as she continued to go into heart failure and was failing to thrive.

Since Lucy's heart surgery she is a completely different baby. She has the energy to play, smile, and even eat. Her two older sisters absolutely adore her and are often found giving kisses, tickles, and lots of love to her. We recently found out that Lucy also has a deletion on her 13th chromosome, which is a rare syndrome called Joubert syndrome. We also learned that she has permanent mild-moderate hearing loss.

As you can see Lucy has a lot medical problems and life has been extremely challenging for her and yet she continues to smile. Every time she sees someone come into the room, Lucy will turn and flash her big grin that always brings so much joy and love. Lucy has taught us to appreciate the little things in life and to enjoy everyday more fully. We truly have been blessed with a life full of more love and joy because of our Lucy girl.

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I am Lucy's mother who has Down syndrome, Joubert syndrome, and a congenital heart defect. We couldn't be happier to have her in our family!

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Mandy Welch Woodman

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The Joy of Life with Lucy: Redefining Rare Disease

When Lucy was born the doctor placed her on my chest and said, "I think she has Down syndrome." Our world changed for the better at that mom