Run for Love, Run for Life: Local family honors daughter’s memory, seeks to heighten awareness of syndrome
By Joseph W. Gex, II
Jan 7, 2014, 17:34
Volunteer chefs Mark Palmer and Tony Viescas served and cooked the tasty food at King Kitchen's first anniversary party on Tuesday. The menu included green beans with caramelized onions and lemon roasted chicken.
While many of us are still reveling in the joy of the holiday season, we often forget that there is also sadness and longing present among us. On Tuesday, January 7th many members of our close-knit Hancock County community joined to remember a life that has touched so many in such a short time. And, Lillie Grace Lafontaine’s love continues to run on even a short year after she left us all too soon.
Lillie Grace Lafontaine, the beautiful daughter of Courtney and Taylor Lafontaine of Diamondhead, was four months and 16 days old when she passed on January 7, 2013. Lillie Grace was born with hypoplastic left heart syndrome or HLHS.
HLHS is a congenital heart defect that is defined by an undeveloped left ventricle and aorta. The defect affects between one and four babies for every 10,000 live births. Treatment for the defect is three open-heart surgeries before the age of three, coupled with various types of care.
This year the family will join 14 other local runners to take part in the Disney World Half-Marathon on Saturday, January 11th to run in memory of Lillie Grace and to help raise awareness of the condition.
Lillie Grace’s father, Taylor, commented, “Courtney’s father, Mike Kennedy, has run this race several times before. And, he was preparing to run the race last year things changed for obvious reasons and he was not able to compete. After everything had settled down some, he and I were talking about running the race this year in honor of Lillie Grace. Then, it just took off like wildfire. It was amazing to see the response from people and how our daughter had touched the lives of so many in such a short time.”
Before long, the race in memory of Lillie Grace went from a father and a grandfather and spread to a mother, close friends and even medical staff personnel that tended to young Lillie Grace. There will be 24 people who travel to Orlando for the race with 16 of them participating in the event
Joining Courtney and Taylor Lafontaine and Mike Kennedy on Team Lillie are Scott Darby of Bay St. Louis, Laura Stevens of Bay St. Louis, Lauren Kulikowski of Diamondhead, Leanne Murray of Bay St. Louis, Rachel Cranford of Bay St. Louis, Kira Reaver of Pass Christian, Amy and Chris Martin of Hattiesburg (Chris is a Kappa Sigma fraternity brother of Taylor) and four family friends of Mike Kennedy and Courtney from the Mobile area.
The 16th runner is Maggie Logan of Birmingham, AL, who was Lillie Grace’s first nurse when she was born at the University of Alabama-Birmingham Medical Center.
The lineup for Team Lillie in the event ranges from immediate family members, to close family friends to those who cared for young Lillie Grace. But, make no mistake about Lillie Grace touched each and every one of them in her very own special way.
Taylor continued, “We have been training for this race for slightly less than a year. It is an awesome feeling that a single thought between my father-in-law and I has grabbed the inspiration of so many.”
And, there are many more who support Team Lillie that cannot make the trip but have shown their own support for the family. Both Courtney and Taylor are employees of the Bay-Waveland School District. Courtney is the school nurse for North Bay Elementary while Taylor is a personal development teacher at Bay High School and serves as an assistant football and baseball coach.
On Monday, Courtney’s colleagues surprised her with a Team Lillie banner and reception while Taylor has been receiving support from his Bay High School family.
Taylor said, “It is very humbling to see just how much people care. We are all running for the memory of Lillie Grace, for awareness of HLHS and for congenital heart defect as a whole. There are so many that are touched by this and we hope that this will help make people aware of it.”
In October 2012, Carolina Panthers tight end Greg Olsen and his wife, Kara, gave birth to twins – Talbot and T.J..
Talbot, their daughter, was born healthy while T.J. was born with HLHS. T.J. underwent his first of three surgeries just days after he was born.
Greg and Kara now have a foundation called Heartest Yard to help raise awareness of HLHS.
All of us have goals that we set and strive for. These different goals may be athletic in nature for some that need to be trained for while others may require a different skill to attain. As we all strive toward our respective goals, the road will get difficult. In those trying times, let us learn from a young one that taught us so much in such a short time. Let us embody the lesson that is the driving force for these runners and is the heart of Lillie Grace, “When your legs give up, run with your heart!”