Episode 5: Spreading Awareness and Advocacy for Trisomy 13 & 18

Yesterday, Sept. 14th we hosted the Third Annual Compatible with Life 5k to benefit families of children with trisomy 13 and 18 through the celebration, advocacy, and community offered by The Stella Effect.

This is such a special event and near and dear to my heart. 

Our daughter, Charlotte Grace, was diagnosed with trisomy 13 (an extra copy of the 13th chromosome) at 16 weeks gestation. We were hit with all the grim stats, myriad potential birth defects, and the term “incompatible with life.”

We made the difficult and emotional choice to carry her pregnancy to term and invested in finding the best medical care possible. She was born full term at 39 weeks, breathing and fully alive, and began to defy every statistic we were given.

She lived for 6 days. We were discussing ways to improve her quality of life. Her QUALITY of LIFE, after being told she was “incompatible with life.” I have trouble not believing that, had the infection not happened, there is a good chance she would have still been with us here today.

During the live event yesterday as people ran and walked to honor and celebrate our families, I shared a bit more of Charlotte’s story, a few other mothers shared their child’s stories, we learned how The Stella Effect is continuing to support these families, and we heard a bit of the history behind and what the future might hold for the medical treatment of children with trisomy 13 and 18 from one of the doctors who pioneered 

The following episode is the recording of our live stream. It is out of the norm for a typical Women’s Running Lab podcast but I would be truly honored if you would give it a listen and maybe even share to help us continue to build awareness.

If you feel so included as to donate to our cause. Donations to the race specifically will stay open through Friday Sept. 19th but you can always donate directly to The Stella Effect at any time. 

Click here to donate to the race through Friday Sept. 19th.

Click here to donate directly to The Stella Effect any time.

But it’s about so much more than money!

The more we spread awareness, the more opportunities for hope we create.

• Hope that families given this diagnosis in the future will see this and have a community to turn to.
• Hope that medical professionals who are quick to offer the grim stats and “incompatible with life” wording will see this and open their minds and hearts to possibility.
• Hope that this awareness and advocacy leads to more support, more medical options, and more hope in the future!

In addition to the live stream during the event, we had a group chat where participants shared their stories and photos. If you want to check out that full experience, you can do so here.

Thank you to the Run the Day Platform for making this all possible!

As always, please share this episode with others so we can continue to grow.