BAKERSFIELD, Calif. (KERO) — A Bakersfield family is going viral — their baby with Moebius syndrome is sparking support across the country. Their story is educating others while showing what life with Moebius syndrome really looks like.
Santi is just like any other 2-year-old — active, curious, and full of energy.
But unlike most toddlers, he was born with a rare condition called Moebius syndrome. Moebius syndrome is a rare neurological disorder that primarily affects the muscles that control facial expression and eye movement.
It’s commonly believed that those with Moebius syndrome can’t smile — but Santi is changing that narrative.
Roxy Tabarez is Santis mom and she says, "We actually found a lot of comfort in the platform TikTok, because we were able to see what other children and families were doing — how they were navigating life with Moebius syndrome. And while it’s very rare, there’s not a lot of people — there are fewer than 7,000 born with Moebius syndrome worldwide. It's like one in a million."
According to the Moebius Syndrome Foundation, there are roughly 2 to 20 cases per 1 million births. It’s likely caused by underdeveloped or missing cranial nerves 6 and 7.
"It’s just so rare that doctors may have heard of it before in their studies, but they don’t see the signs right away to get them diagnosed." Roxy said.
After posting on TikTok, Roxy says her family was flooded with messages from people who had never heard of Moebius syndrome — and others who were living with it
"We started posting some videos, and one of them really blew up — it has over 8 million views. We noticed he got so much love, which we were happy about. There were a lot of people saying, 'We’ve never heard of this condition before, and wow, thank you for educating us.'" Roxy said.
In that viral clip, you can see Santi moving his face — making the impossible possible.
The Tabarez family TikTok is T_Partyof_6
MOMM Brand website
Go Fund Me website
Moebius Syndrome Foundation website
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