Down Syndrome Association of Brevard Changing Attitudes, Improving Lives
“The only disability in life is a bad attitude.”
— Aknesha Miller, board secretary for Down Syndrome Association of Brevard and parent to 3-year-old Alaric, who has Down syndrome
Alaric Baruti and Bobby Campbell are different, yet similar. Alaric is 3 years old, lives in Melbourne and loves Ritz Bits and the YouTube animated channel Cocomelon, while Bobby, of Rockledge, is 34 and lives to surf and dance.
Both had their image appear in a video on Broadway Sept. 9 as part of the annual National Down Syndrome Society Times Square Presentation on JumboTron screens in the heart of New York City. Their photos are part of a 500-photo video created to highlight the National Buddy Walk® Program — a fund and awareness-raising initiative to support the Down syndrome community.
Their families’ journey navigating the challenges of Down syndrome have been made easier by the Down Syndrome Association of Brevard, a grassroots group originated by individuals who love someone with the genetic condition.
The small group has hosted a Buddy Walk® since 2002. The Buddy Walk® Program, established in 1995 by the National Down Syndrome Society, promotes acceptance and inclusion for people with Down syndrome and has grown to 150 events hosted across the country and internationally. Hundreds of thousands of walkers collectively raise funds to support both local programs and national initiatives. The 21st Brevard Buddy Walk will be Nov. 4 at Calvary Chapel of Viera.
Brevard’s Buddy Walk has blossomed from a few families to more than 900 participants in 2022. Also in 2022, the Association added the “Down for Derby Gala and Auction.” Funds raised from the two events enabled the previously all-volunteer organization to hire its first executive director, a part-time position that evolved into a full-time post this year.
The nonprofit provides free community events, seminars, educational series, therapies, tutoring, technology, medical devices and anything else that will help to further enrich the lives of Down syndrome persons and their families.
Down syndrome occurs in one in 700 births.
“Based on Brevard population reports, we estimate there should be around 800 persons with Down syndrome in Brevard,” said executive director Victoria Timberlake. “We have touched around 200 of those individuals directly but still have room to grow.”
Individuals with Down syndrome have a full or partial copy of chromosome 21 and possess cognitive delays that run from mild to moderate.
Medical advances have greatly increased the lifespan of individuals with Down syndrome, which, according to the Global Down Syndrome Foundation, was only 25 years as recently as 1983. As many as 80 percent of adults with the condition now reach age 60 and beyond.
“This presents unique challenges for parents and families as this generation is the first in recorded history that will outlive their parents,” Timberlake said.
Association board member Shawna Lucas remembers her parents’ worry about her brother, JJ, born with Down syndrome.
“It was a scary proposition for my parents,” said the Indialantic resident. “They didn’t want to make him a responsibility of ours. Siblings, of course, we protested vehemently, but they were steadfast. They worried constantly about this but really had no options. In the end, he passed before them. But it was always in the air, hanging heavy.”
Lucas adds that despite the medical advances, the predominant thought remains that children born with Down syndrome are incapable of a happy, fulfilling life. Alaric Baruti and Bobby Campbell are not buying that, because they are having too good a time.
Timberlake, Lucas and the members of the Down Syndrome Association of Brevard work to replace the old mindset with an appreciation of the potential of Alaric, Bobby and the rest of the Down syndrome community.
“I challenge all of you who have been told your children or family member or friend have a disability to change the narrative, change the mindset, change the attitude to they have an extra ability,” said Alaric’s mom, Aknesha Miller, board secretary for the Association. “Alaric’s smile is love personified. You feel it in your heart, this is his extra ability. The only disability in life is a bad attitude.”
The 21st Brevard Buddy Walk
Nov. 4, 9 a.m.
Calvary Chapel of Viera
2852 Fellowship Place, Melbourne, FL 32940
dsabrevard.org
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