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CENTRAL FALLS – For the sixth year in a row, Central Falls resident Sara Lopes Tavares held a Cornelia de Langue syndrome (CDLS) awareness day, in honor of her younger sister Samira, who was born with the genetic condition that affects fewer than 1 in 10,000 children.
The event, which was held this year on May 10 at Macomber Stadium in Central Falls, also celebrated and brought awareness to other children like Samira, with music, games, food, and a parade. Participants wore purple, the official color of CDLS awareness, to raise awareness as the first step toward early diagnosis, access to care, and understanding.
Lopes Tavares describes her 17-year-old younger sister as a caring girl, who loves to dance, clap, and enjoys the “Happy Birthday” song.
She added that Samira loves to show others what she is doing, by grabbing their hand and guiding them to where she needs to go or what she needs to do.
Samira, a student at Central Falls High School, is non-verbal, but knows a bit of sign language, according to her older sister, who said that having CDLS affects growth, development, and all systems in the body.
Children with the condition have distinct facial features, such as eyebrows meeting in the middle, long eyelashes, a short upturned nose, and thin, downturned lips. Other common craniofacial features include low-set ears, small, widely spaced teeth, and a low hairline.
But according to Lopes Tavares, Samira has a big support system involving her dad, mom, cousins, aunts, and herself, who are there for her daily, as well as a whole family spanning from Portugal to Cape Verde to America.
“I want people to understand that children and families living with CDLS are strong, loving, and human,” she said. “This is about visibility, support, and hope,”
Lopes Tavares said that as a CDLS advocate, she also wants people to respect all differences, and to not be afraid of Samira if approached by her.
“My sister is awesome and if she comes close to you, she just wants to dance or play,” she said. “She’s not a monster because she looks different. I am a sister of a warrior.”
👏 Amazing . So thoughtful..