Introducing La. Ambassador: Heather Benoit

After losing Millie, my husband and I wanted to put something into action to raise awareness of Turner Syndrome and to celebrate our daughter’s life. In November of 2017, we began planning our inaugural event, Move it for Millie, which we would hold in February during National Awareness of Turner Syndrome Month. Move it for Millie featured a dance a thon and a 5K run/walk and was an amazing event. We had such a supportive turnout that we will be holding our event annually each February in our hometown of Thibodaux, La. Fundraising and event planning has always been a passion of mine, so after Millie’s event I wanted to take on a new role with the Turner Syndrome Foundation. I am a National Council of State Leader for the TSF. My mission is to help other families with raising awareness and also provide resources for families and individuals that have been affected by Turner Syndrome all throughout our country.

My ultimate goal is for the citizens of our country to be educated on Turner Syndrome and to show them all the positive side of the disorder. Many Americans do not understand that there are many women living positive and fulfilling lives with Turner Syndrome. During pregnancy, Turner Syndrome babies are given a 2% chance of survival and many of those butterflies beat the odds every single day. Turner Syndrome women are miracles who are the strongest and most beautiful individuals that walk this earth. They should be celebrated and honored and with my outreach goal, that will ultimately happen for them. 

“Perhaps the butterfly is proof that you can go through a great deal of darkness yet become something beautiful.”

About Me: 

I am a Program Director at the Wallace Community Center in Raceland, LA where I hold a school enrichment program for high poverty children in our area. My program, Beyond the Bell, is a nonprofit program that enhances the lives of our children daily. I have been the director for four years and I love working with children. Before serving as director, I taught second grade in our parish’s public school system for four years. Education has always been my passion and I believe that is the greatest tool to have in your life. I have my B.S. in Early Childhood Education and a M.Ed. in Curriculum and Instruction with a Reading Specialization. I am married to my high school sweetheart, Brad, and we have been married for four years. We have a 2 and half year old son, River, a sweet butterfly daughter who lives in heaven, Millie, who was born stillborn in late October 2017 at 27 weeks, and we are expecting our third blessing in late November of 2018.

Millie was diagnosed with Turner Syndrome through the NIPT blood test at 13 weeks gestation. At our 10 week ultrasound, Millie had a thickening nuchal fold that caused a concern from our OBGYN. After receiving Millie’s diagnosis, I began my research and also my blogging journey to document our sweet angel’s life. Each day was a challenge as she developed a large cystic hygroma and hydrops in her precious little body. We chose faith over fear every day and loved our daughter unconditionally and knew that God would lead our journey. To read more about our journey, please feel free to visit my blog at:


Email to get started!

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