Watch CBS News

Maryland child diagnosed with TBCK Syndrome to serve as ambassador at Festival of Trees, benefitting Kennedy Krieger Institute

First child in Maryland diagnosed with TBCK Syndrome to serve as ambassador at Festival of Trees
First child in Maryland diagnosed with TBCK Syndrome to serve as ambassador at Festival of Trees 02:21

BALTIMORE - The holiday season is just around the corner which means the Festival of Trees will kick off next weekend.

Hundreds of trees, wreaths and gingerbread houses will be decked out with cheer to raise money for the Kennedy Krieger Institute.

But this year, the first person in Maryland to be diagnosed with TBCK Syndrome, will serve as one of the institute's youngest ambassadors for the fundraising event.

Six-year-old Violet loves to play with toys.

But unlike most children, she is battling a rare neurogenetic disorder called TBCK Syndrome.

Violet faces intellectual and developmental delays that affects her speech, muscle movement and respiratory.

"That special genetic testing is hard to get," Inez Vazquez, Violet's mother, said. "And I think a lot of families don't get the diagnosis when they are first born like Violet." 

Truist supports Kennedy Krieger Institute and Festival of Trees 04:14

It's a relatively new disorder but Kennedy Kreiger Institute has been by Violet's side every step of the way.

"When I first met her, we did not have a crystal ball to see how she would develop and progress," Dr. Mahim Jain said. "But with all the hard work she's doing, all the hard work her families doing and the support we are able to provide, we are seeing tremendous improvements."

Violet is a patient ambassador for Festival of Trees this year. Her story helps people recognize the efforts the institute does day in and day out to help patients like her.

Every year, people deck out hundreds of trees, wreaths and gingerbread houses to sell at the Festival of Trees.

The money raised helps pay for research, therapies, treatments for the institute's patients.

"Some kids have to get tracheostomies and G-I tubes," Vazquez said. "Sometimes medical equipment they need and devices are hard to get for our kids."

"It's super fun they can see the trees, they can visit Santa, they can do some shopping," Kennedy Krieger Institute Public Relations Director Jessica Gregg said. "But we also want them to leave with an awareness of the work that we do here at Kennedy Krieger."

Vazquez is overjoyed that her daughter can be a face for a fight that is paving a way of awareness.

"The hard part of TBCK is our kids suffer from regression so like doing this for her...I don't know what her future is going to entail, Vazquez said. "But, I'm so proud of her. She is just so strong."

Festival of Trees will be at the Maryland State Fairgrounds this Thanksgiving weekend starting November 25 to November 27. 

For more information, visit this website

View CBS News In
CBS News App Open
Chrome Safari Continue
Be the first to know
Get browser notifications for breaking news, live events, and exclusive reporting.