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Mom Bullied For TikToks Of Baby With Rare Genetic Condition Responds Brilliantly To Hateful Comments

Photo: TikTok
Ember Torres

Mom, Ember Torres, started posting videos on TikTok to share her love for her baby boy Derek with the world.

Unfortunately, people on TikTok proved the world can be a cruel place for people with differences, even when those people are infants.

Torres's videos of Derek, who has a condition called holoprosencephaly, started getting lots of views and attention from people who had shockingly horrible things to say.

One of her earliest videos with Derek has 6.6 million views and 515,000 likes — and is heartbreakingly riddled with hateful comments, such as "He doesn't deserve this," "Painful to watch," and "What is it?"

The 9-month-old whose videos Torres often captions with hashtags like #lovemyson, #mymiraclebaby and #derekstory, was born with holoprosencephaly, also known as holoprosencephaly sequence or HPE.

What is holoprosencephaly (HPE)?

According to the National Organization for Rare Disorders (NORD), HPE is a rare condition that results in abnormal development of the brain due to the failure of the forebrain to develop normally.

Torres explained in a mini-series she called "storytime with Derek" that she and her partner didn't know Derek had HPE until she had an ultrasound and MRI when she was eight months pregnant.

They had already known Derek would have problems with his spine, which was crooked, clubbed feet and kidneys of different sizes. "Nothing too serious, but we still that there was something wrong," Torres said.

Photo: TikTok

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Doctors told Torres that most babies with HPE "don't live to birth, and if they do, they don't usually live past it."

“For a while, they would ask us if we wanted to abort him, and it was something that we talked about quite often and it was something we were both scared of," she continued. "Because we knew if that he did have this gene that letting him live would basically be torture to him."

“For a while there it was really hard having everyone tell me that my son was just gonna die, especially when I could feel him and how strong he was," Torres explained. "Just feeling how strong he was, feeling him kick to his dad's voice and just having hiccups, these little things made me think that he might live even with these things.”

Rather than supporting the young mom who has obviously been through a tremendously difficult time and deeply loves her child, many cruel TikTokers started commenting on her videos, "suggesting" she should put the baby "out of its misery" and "put it down."

Photo: TikTok

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However, they were willing to take a chance and be "selfish," as she (and some TikTokers) put it, to see their baby and for Ember to give birth.

"We ready to let him go. And if it’s selfish to wanna meet him before that, then yeah, we were selfish parents. But, I am so glad that we did, because he lived. He wasn’t dying, he wasn’t suffering, he wasn’t... he was fighting to stay alive, but not in a sense that it was chore for him... Just in the sense that I’m here and I’m alive.”

Torre's responded to those people bullying her by saying, “We know he’s not normal. We know he’s gonna have some things that are difficult, but we also know he’s just like a regular baby.”

“He still feels, he still learns," Torres explained. "He’s not suffering. He’s not in pain. He’s not fighting for his life to this day, no.”

Soon after he was born, Derek had trachea surgery so he would be able to breathe more easily, and thankfully it was a success. The doctors also gave Derek a feeding tube because they assumed he wouldn’t be able to eat by mouth, as he didn’t have a second airway.

Regarding the comments saying Torres should have had an abortion, Torres said she and her partner were ready to let him go if what the doctors thought was true.

The hateful comments continued, flooding Torres shamefully.

Photo: TikTok

But the devoted mom clapped back with a powerful point.

"He is a baby. He is a human being with a soul, with a conscience. You can’t just put them down because you don’t like them.”

No matter how many hate comments Torres gets, she says will fight for her baby and defend Derek till the end, just as Derek fought for the right to be born.

“He’s my baby," she said, "I’m gonna love him no matter what.”

In response to her haters who are worried about Derek being bullied when he gets older, Torres said, "You guys are all worried about him getting bullied later on in his life, you guys are bullying him right now."

“You guys are worried about how other people are going to react later, maybe worry about how you are reacting right now."

Torres has said she will continue to answer respectful questions about Derek to show that babies with HPE can survive and should be allowed a chance to live.

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Megan Hatch is a writer at YourTango who covers pop culture, love and relationships, and self-care.