Kansas mother says TikTok banned videos over son’s skin condition

Midwest

WICHITA, Kan. (KSNW) — Marky Jaquez was born with the rare skin disease “epidermolysis bullosa,” also known as butterfly syndrome. His mother, Melissa Jaquez, who runs his TikTok account, said videos of her son are being flagged and taken down by TikTok.

The following video was one of the few flagged of the 20-year-old and his dog, King David.

Melissa said the video was removed for graphic content. She said TikTok took her account down after she appealed it.

“I told him that this is construed as ableism and discriminatory, so then they banned my entire account,” Melissa said.

The ban even caught the attention of some well-known celebrities on Instagram.

With Marky’s condition, any friction on his skin can cause it to tear. Melissa said she lost her first son to the disease; which is why she is fighting to bring more awareness to it.

She said social media adds exposure. “In the grand scheme of things, yes, it’s just social media, it’s not important in the grand scheme of life, but it is in his life because it’s awareness, it’s bringing awareness to his disease.”

Melissa said she would like to meet with TikTok to work out a more ableism-friendly policy.

“I want to see that they actually have a policy, an ADA policy. I want them to have a policy that they have that does not allow them to be discriminatory.”

Melissa said she is proud of her son for being strong and staying positive even when hardships like this happen.

“We got to stop letting people be silenced.” she said.

NewsNation affiliate KSNW reporter Hunter Funk reached out to TikTok about the situation. She was told that Jaquez’s account is no longer banned. She is still trying to get more information on why it was taken down in the first place.

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