Why We're Running the 2019 TCS NYC Marathon for The Children's Heart Foundation - Kristen & Jim's Story

By: Kristen Devane

Our granddaughter Liliana was diagnosed at 20 weeks gestation with AV Canal defect, and her Coarctation of the Aorta wasn't discovered until birth. Within the first 24 hours of her being born, she had to be whisked away from my daughter's arms to be life-flighted from Greenville, SC to Charleston, SC to the Medical University of South Carolina (MUSC).

She underwent her 1st surgery (Norwood) at only 2 weeks old. They put in a PDA stent and 2 pulmonary artery bands. This was to be the temporary fix until she was older and stronger to do a full repair. She spent the first 51 days of her life at MUSC with some amazing doctors and nurses caring for her, with mommy & daddy by her side every day.

Liliana would then return for her 2nd (and "final" for now) surgery when she was 9 months old.

She has been such a strong fighter with everything she has been through in her first few years. She is our inspiration. On the days when we feel like we can't go any further, or we are complaining about an ache or sore muscles….she is what keeps us going. If she could go through what she did and never give up, then neither will we!

Liliana is now cleared to only once a year cardiologist visits, and they are keeping an eye on a leaky mitral and tricuspid valve.

We celebrated her 3rd birthday on June 21st and are grateful to the awesome doctors at MUSC each and every day.

My husband Jim and I have run several NYC Marathons together (one that even ended with a wedding proposal at the finish line...I said YES!!), but this year we will are honored to run with The Children's Heart Foundation's team to help raise money & awareness for CHD research.

I know Liliana will be with us every step of the way - inspiring and encouraging us, as she always does!

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