Why Mom Grieves Deaths of Her Kids with Rare Disorder Despite Them Being Alive: 'Is This Real Life?' (Exclusive)

Julia Erwin shares on TikTok that she often thinks about, "The day that doctors tell me is coming — when my kids aren't alive anymore"

A mom of two children with a rare genetic disorder is going viral on TikTok for sharing her candid and vulnerable thoughts about hearing from doctors that her "kids will die," likely before she does.

Julia Erwin, who lives on a small farm in east Tennessee with her husband Aaron and their two kids, Russell and Hazel Rose, has garnered more than 128,000 TikTok followers for her often frank assessments about life as a mom of two kids with special needs.

In one video, Erwin talks about hearing from doctors that her kids will die, saying, "A lot of days I do wonder, when's that day gonna come? The day that doctors tell me is coming — when my kids aren't alive anymore. I wonder how it will happen, what it will look like, I wonder who will be there, I wonder what it will feel like, I wonder how I'll move on."

Speaking to PEOPLE in an exclusive interview, Erwin says, "I go through different seasons where I share different things [on social media.] Talking about my kids' lifespans and the realities help me walk through the grief of it."

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Erwin's grief story starts well before her children were officially diagnosed with a rare genetic metabolic disorder known as Nonketotic hyperglycinemia (or NKH).

In 2017, Erwin gave birth to her first child — daughter Hazel — whom she says "started acting funny" within days. Erwin and her husband brought Hazel to the hospital and "she stopped breathing as soon as she was in front of the doctor."

After a month in the hospital punctuated by Hazel having "hundreds and hundreds of seizures," doctors told Erwin her child was suffering from brain damage, but offered "no real answers."

"When we left the hospital, they basically told us that her brain was mush," Erwin says. "She got a feeding tube and our life was in chaos for a year. Her muscle tone was very low, she wasn't hitting any milestones. She was just kind of laying there."

Eventually, though, the couple got "our feet back under us," Erwin says.

"We thought, ‘We can do this, this sucks but okay, we got this,' " she adds.

When Hazel was almost 3 years old, the couple decided to try for another baby and ultimately got pregnant with a boy.

At 12 weeks pregnant, tragedy struck again, when Erwin was diagnosed with a tumor on her cervix.

"Russell and I did four rounds of chemo while he was in the womb, while having a special needs daughter at home," she says.

At 35 weeks, Russell was delivered via cesarean section, and doctors performed a radical hysterectomy on Erwin.

"At that point, we felt like our story was redeemed — we had this perfect baby boy. And I was in recovery," Erwin says. "Then, Russell’s lips turned blue. And he started having seizures."

After spending weeks in the neonatal intensive care unit and nearly a year of tests and doctor's visits, Russell was diagnosed with NKH. Then, Hazel was, too.

As Erwin explains, NKH is "a degenerative disorder, so it means their body literally degenerates and kills itself over time due to a heightened glycine level in the brain."

"Most kids with this disorder die at 10 days old," Erwin says. "The next average is 3-5 years."

But the disorder is so rare — affecting just a few hundred children in the U.S., Erwin says — that knowing how it will affect her children long-term is nearly impossible.

Both of Erwin's children face significant challenges — Hazel has trouble walking, while Russell uses a wheelchair and does not walk, and both are non-verbal. But with Russell recently turning 4, and Hazel turning 7, both have beaten the odds — though as Erwin explains to her followers on TikTok, doctors frequently warn her that they could die from the disorder at any time.

"It’s a metabolic disorder, so a lot of times, there will be an organ failure — a child will go to sleep and just not wake up," she tells PEOPLE.

Coming to grips with the reality that her children could die at any moment hasn't been easy, though Erwin says that being open about it has been therapeutic for her.

"A lot of the stuff I share online, my friends and family don't even want to talk about — we have two kids that are literally dying," she says. "That's how most people live — they don't want to face the hard things. But facing the reality is, for me, something of a protection mechanism."

She continues: "Everyone expresses grief differently and that's what this is: grief. The grief of not having what we thought we were going to have, the grief of potentially losing our children at a very young age. Every day, I wake up and I think, 'Is this real life? Are they still here?' "

As Erwin recounts in one video, mornings are often the most difficult moments, particularly on the rare occasion that one or both of her kids sleep in.

"There's always a worry that is this going to be the day when I walk in their room and they'll be gone," she says.

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In an effort to remain as optimistic as possible, Erwin says she has focused on faith.

"It will be the worst day of our lives, don’t get me wrong. But I try to remember that, when our kids die, they will go be with Jesus," she says. "In some way, it gives me peace."

But getting to a place of positivity has required a shift in thinking — and a purposeful effort to surrender, Erwin acknowledges.

"In the early days [of the diagnoses], I was desperate for a shortcut — some way to shortcut the grief, to shortcut the circumstance of having a child with a feeding tube. And there isn’t a shortcut," she says. "You have to go through to get out."

She continues: "I feel in my bones that I have been given an incredible privilege to tell my story — to inspire people. Even when things are absolutely at their lowest, you can still have joy. Sometimes, you just have to look really, really hard for it."

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