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People are celebrating their siblings with Down syndrome on TikTok

“We want to spread compassion, hope and awareness, but also show the complexities of life."
Down Syndrome
Nick and Gabe Safier's TikTok account is about life with a sibling who has Down syndrome. @nickyandgabe via TikTok
/ Source: TODAY

Nick Safier and his little brother Gabe share the best ritual.

When Nick, 28, leaves home and returns, his brother Gabe, 21, who has Down syndrome, gives him a big hug and a kiss on the nose. Sometimes Nick picks up Gabe and holds him in his arms, other times Gabe immediately races into his bedroom to change into the exact outfit Nick is wearing, a family joke they called "twinning."

Gabe usually falls asleep on the couch waiting for Nick to arrive home. When he wakes, the brothers do a routine called "Five minutes at night," sitting on the couch and talking for much longer. Although Gabe has a harder time communicating, he uses a mix of hand gestures, sounds and a few words.

The Safier brothers are part of a group of creators who make content about having a brother or sister with Down syndrome, which is associated with physical and mental difficulties. March 21 (3/21) is World Down Syndrome Day, chosen because people with Down Syndrome have three copies of the 21st chromosome instead of the usual two.

"Gabe lives his life to the fullest," Nick tells TODAY.com. "I often hear, 'Gabe is so lucky to have a brother like you' ... but there's also the reality of what Gabe has brought to me and our family."

TikTok accounts like Nick and Gabe’s combat myths and prejudices while they show the love and joy their siblings bring to their families, in videos often set to sweet and uplifting music.

The brothers are, clearly, the best of friends. They live together in Brooklyn, New York with Gabe’s twin sister Kira and their parents. Nick and Gabe also work together on their TikTok channel Nicky and Gabe, where Gabe does impressions of his brother, joins internet trends and plays pranks.

Many of their videos show the depth of Gabe's emotions.

“When anyone in the family is happy or upset, Gabe understands that on such a deep level,” says Nick. “If Gabe sees us crying, he will cry too ... or he laughs to the point where people have to calm him down.”


Down Syndrome
Nick and Gabe Safier, who has Down syndrome, share a TikTok account about life as siblings. @nickyandgabe via TikTok

"We want to spread compassion, hope and awareness, but also show the complexities of life with Gabe," says Nick.

For example, Nick is filming the process of their parents (and subsequently Nick and Kira) becoming Gabe's legal guardians now that he's 21.

"Gabe will never go to college, live on his own, get married or have children," explains Nick. "He can't write his name. At the beach, he doesn't understand why he can't swim past a certain point in the ocean. These are realities of the cards that we're dealt. However, the beauty is, (Gabe has so much) love and appreciation for family and having fun."

Nick says Gabe thrives on having a schedule and their "hello-goodbye" tradition tells Gabe they will see each other again.

"In many ways, Gabe's whole world is his family," says Nick. "It can be hard for him to see his brother leaving and ... it's his way of connecting."  

TikTok creators Erin Johnson and her brother Matt Rhodes, who has Down syndrome, share the account "Erin Advocates." Their bio is "Celebrating extra chromosomes."

Johnson, 30, posts videos of her 24-year-old brother's sense of humor and the gentleness he displays with her children, ages 5 and 3. She also counters stereotypes about people with Down syndrome.

"I have a sibling with Down syndrome, of course I'm going to befriend anyone who also has a sibling with Down syndrome," Johnson joked in one video. "Of course I have sign language stored in my muscle memory ... of course I'm going to wonder why you're staring at him."

Johnson tells TODAY.com that growing up, she felt protective of Matt.

"I didn't know what Down syndrome was ... (just that) he was my little brother and I was going to look after him," she says.

Her brother's diagnosis inspired Johnson to become a special-education teacher and run an inclusive sports program at a local school in Michigan. She also wrote a children's book called "Eyes Different Than Mine" about a little girl with a brother who has Down syndrome.

Johnson says assumptions that Matt isn't intelligent are wrong.

"Intelligence is so much more than an IQ number," she says. "Matt has so much emotional intelligence and knowledge of things like ... Disney World, Universal Studios, the weather and time differences ... when people say he's not smart, I don't know what they're talking about."

Matt loves being on camera, says Johnson, and when he's not in the mood, he says, "Not now."

Their relationship is typical, says Johnson, with a bit more support.

"I want to change the world for Matt because he changed my world," she says.

For more TikTok creators celebrating their siblings with Down syndrome, see the eight videos below: