MT. JULIET, Tenn — A Mt. Juliet toddler born with a rare form of Down syndrome will make a special appearance on the Times Square jumbotron Saturday, bringing joy to his family and raising awareness for the condition.
"Legend Whaley will be about a year and a half old when he turns two at the end of March," said Whaley.
He was born with a rare form of Down syndrome at Vanderbilt Medical Center.
Legend's journey began with a 22-day NICU stay for monitoring feeding issues, followed by heart surgery at just four months old that kept him hospitalized for months.
"Those were the dark days, that's what I considered them because it was just like going through the motions, you know," Lakyn Whaley said.
Throughout the challenging early days, the Down Syndrome Association of Middle Tennessee provided crucial support to the family.
"They were life changing. They've provided so much knowledge and kindness and acceptance," Whaley said.
According to Whaley, Vanderbilt will study her son because only 250 cases of Legend's specific diagnosis, Isodicentric Trisomy 21, have been recorded worldwide. She said he was also born with two heart conditions, a AVSD defect and coarctation of the aorta.
"So from what I know, the study involves just like lifelong following him for future children that have his form of Down syndrome," she said.
As a proud mother, Whaley entered a contest from the National Down Syndrome Society's Buddy Walk in New York.
"I got an email saying out of 2,600 worldwide entries they selected 500 and his photo was selected, which was just crazy," she said.
The family will watch virtually from Mt. Juliet Saturday as Legend makes his appearance on the jumbotron in Times Square Saturday, Sept. 6.
"I mean I wouldn't change him for anything. Now he's constantly laughing, smiling. He has all these friends on Facebook," Whaley said.
Whaley says she will join The Extra Mile walk, which helps promote understanding and acceptance. The event is happening in early November.
Have you witnessed the power of community support during challenging times? Legend's story shows how organizations like the Down Syndrome Association of Middle Tennessee make a difference for families. Watch Kim's full report above to see this inspiring journey from NICU to Times Square, and share how community support has impacted your family. Email Kim at kim.rafferty@NewsChannel5.com to continue the conversation about building stronger support networks in our community.
In this article, we used artificial intelligence to help us convert a video news report originally written by Kim Rafferty. When using this tool, both Kim and the NewsChannel 5 editorial team verified all the facts in the article to make sure it is fair and accurate before we published it. We care about your trust in us and where you get your news, and using this tool allows us to convert our news coverage into different formats so we can quickly reach you where you like to consume information. It also lets our journalists spend more time looking into your story ideas, listening to you and digging into the stories that matter.
I'm so thankful Robb Coles highlighted the Kamer Davis clinic in Hermitage and the hardship that may force its closure. The clinic provides care for patients with intellectual and developmental disabilities and there is no other place like it nearby. You can tell the staff is so passionate about the care they provide. I hope by shining the light on this, the right person can step in and make a difference.
- Carrie Sharp
