Mom Shares Video of 5-Year-Old Daughter Asking Heartbreaking Question About Living with Chronic Illness (Exclusive)

NEED TO KNOW

• Maygen Steed recently captured a video of her daughter asking if she would have diabetes forever
• Steed tells PEOPLE her "heart broke" in that moment
• The video, which she shared on TikTok, amassed over 550,000 views

In December 2022, when Maygen Steed's daughter, Paisley, was still a toddler, she noticed the little one seemed under the weather and assumed she had the flu.

Although Paisley was drinking plenty of fluids, she seemed dehydrated, was noticeably lethargic and "could barely lift her own head."

"I remember cradling her in my arms as my husband drove us the 30 minutes to the nearest emergency room. I didn't even have her buckled in because she couldn't lift her head," Steed, 30, tells PEOPLE. "I was afraid she'd stop breathing."

"When we arrived at the emergency room, they immediately took us back. They called in a careflight for her, and she was sent to a children's in Dallas," she continues. "When she got to Dallas, they said her blood sugar was over 600, and her A1C was 12.8%."

It was in that moment that Steed learned her daughter's actual diagnosis, quickly realizing that she didn't have the flu, but was in diabetic ketoacidosis (DKA) — a "life-threatening complication of diabetes and undiagnosed Type 1 diabetes," per the Cleveland Clinic.

According to the academic medical center, an A1C test measures "the average amount of (glucose) sugar in your blood." For people without diabetes, a normal A1C is below 5.7%.

Paisley Steed in the hospital.

Maygen Steed

"The doctors told us that if we waited any longer to bring her in, she wouldn't be alive," Steed shares. "I still have nightmares about her diagnosis day."

While the family has learned how to manage Paisley's type 1 diabetes, it hasn't been easy.

Recently, Steed shared a video of her daughter in the car, asking from the backseat if she would have to deal with diabetes her whole life.

"When I grow up to be a mom, will I still have to have a Dexcom and pod?" the now-5-year-old asked in the clip, which went viral, amassing over 550,000 views.

Steed wrote atop the video, "I walk into a haunted house but instead of clowns & monsters it's just my baby asking me if she'll still be diabetic when she grows up."

Steed shares that "in that moment, my heart broke."

"No 5-year-old should be having to think about whether or not they will continue to struggle with a chronic illness when they are a mom," she says. "As I fumbled with the words to say, I just softly said yes because I can't lie to her."

"This will be something that she deals with for the rest of her life. As long as I am her mom, though, I will take as much of the burden off of her as I can," Steed adds.

Steed has been inspired to share information about Paisley's diagnosis on her TikTok account as a way to "advocate and share about type 1 diabetes."

Paisley Steed.

Maygen Steed

"While the actual diagnosis of type 1 diabetes cannot be avoided (it's an autoimmune disorder/genetic), a traumatic diagnosis can be avoided by knowing the signs and symptoms of early DKA," she shares.

Along with type 1 diabetes, Steed notes that Paisley "also suffers from thyroid trouble."

"I struggle with caregiver fatigue and anxiety over parenting a high needs child," she adds. "Every alarm that goes off on her phone, my chest tightens with worst-case scenarios, but I am working on that and trying to be positive."

"Her Graves' disease is in remission, but we are currently struggling with hypothyroidism and all of the side effects from that. Her little body goes through so much," she shares.

Despite this, Steed tries to remain positive about Paisley's type 1 diabetes diagnosis, which she's had for a "little over three years."

"Each year on her 'diaversary', we have a little celebration that we hit another year of surviving with T1D. She knows all about her condition and enjoys explaining to people why she wears a CGM and pump," she shares.

Paisley Steed playing golf.

Maygen Steed

She notes that Paisley loves playing with makeup, babies and golfing, but struggles with large crowds.

"She used to participate in gymnastics and soccer, but when her peers would touch her devices (pod/Dexcom), she had trouble speaking up and setting boundaries," Steed says. "She is so full of personality, and sometimes I forget that she's only 5, not 15. She is witty and such a joy to be around."

"Although I cannot trade places with her, I can educate myself on the best way to care for her and advocate for her needs," Steed adds.

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