Lily’s story: From Mary’s big sister to passionate advocate

**This story was submitted via our #MyDsStory submissions 

Written by our guest writer, Lily Bauer 

My little sister Mary Elizabeth is my hero! Since the minute my mom was pregnant with Mary, we have loved her infinitely. We knew she had Down syndrome after my mom’s first US. She has overcome so much in her sweet 2.5 years. She underwent open heart surgery at 6 months old and was placed on ECMO (life support) the day after.  

She fought so hard, and we had prayer warriors throughout the world praying for her. She is our miracle. Every day she works so hard to talk, learn, and she loves to dance! The minute she hears music, she immediately starts moving to the beat! Her laugh is contagious and the most perfect music! She has made everyone in our family better people, and she has taught us to take life one day at a time and to truly appreciate the blessings that are all around. Every day, she seems to learn something new, and I am so incredibly grateful I get to watch her grow! She has a documentary coming out soon documenting her miraculous recovery post-heart surgery and ECMO to bring greater awareness to Down syndrome and to continue to advocate for the inclusivity of individuals of all abilities. I have started Mary’s Mission: Advocating for individuals of all Abilities! My hope is to educate others and advocate for kindness and inclusion. My dream is to open a local GiGi’s Playhouse here in my community.  

We invite all our readers to share and submit your stories so we can continue to highlight the beauty of Down syndrome. Submit here.