‘My Entire World Shattered’ (Exclusive)

YOU NEED TO KNOW

• Stephanie Nicklow shares her son Theodore’s journey with Klinefelter Syndrome to raise awareness and support others

• Theodore was diagnosed through genetic testing and is currently receiving early intervention services, including speech therapy

• Nicklow’s TikTok videos about Theodore’s diagnosis have gone viral, racking up millions of views

Stephanie Nicklow underwent standard noninvasive prenatal testing (NIPT) while pregnant with son Theodore, but when the results came back “her whole world was shattered.”

He tested positive for Klinefelter Syndrome. according to Mayo Clinic, Klinefelter Syndrome is a genetic condition in which “the male assigned at birth has an extra copy of the X sex chromosome instead of the typical XY,” affecting testosterone production. This can affect development, muscle mass, speech, energy levels and ultimately affect the likelihood of having children.

“I was horrified. I had heard of Klinefelter Syndrome before, but I didn’t know much about the chromosomal disorder,” shares Nicklow. “After researching Klinefelter syndrome, I decided to decline amniocentesis because Klinefelter syndrome was not life-threatening and her genetic screening at 16 weeks came back normal. She was tested after birth with a blood test called karyotyping.”

When her karyotype blood test came back positive for Klinefelter Syndrome, Nicklow immediately enrolled her in early intervention and with a pediatric geneticist.

“Due to his diagnosis, he is automatically eligible for early intervention. At first, he only received service coordination. However, when he was 15 months old, he started receiving speech therapy twice a month,” he shares. “He had met all his milestones except speech. He has seen his pediatric geneticist twice and has an appointment coming up this summer.”

The mother of three says the only thing that has changed in her diagnosis of Theodore’s parenting is that he is now learning to “slow down and embrace the chaos.”

Theodore is her youngest son, and Nicklow shares along with his diagnosis that he’s a “typical 2-year-old toddler.”

“He’s the youngest of three boys. He loves playing with his big brothers, playing outside, and playing in the water. He’s very cuddly, cuddly, and very sweet,” she tells PEOPLE.

Now he shares Theodore’s story tiktok “to raise awareness so others don’t feel so alone.”

“I learned that the last day of February every year in 2024 is National Rare Disease Day. I saw others posting about themselves or their children on social media. I wanted to post about Theodore and the Klinefelter diagnosis,” she explains. “The first video got a lot of views. I have a few TikTok videos on Theodore that have gone viral.”

His son’s latest viral video has been viewed more than 1.6 million times. In the short video, he explained that although he “looked like a normal toddler,” he had a chromosomal disorder.

He says the response to his videos has been “mostly positive.”

“I have had other mothers reach out to me who are pregnant and their sons have been diagnosed with Klinefelter Syndrome. I share my experiences with them and help them put their minds at ease,” she says. “I’ve had other people share that they have a loved one or friend with Klinefelter Syndrome. I’ve also seen men say they have Klinefelter Syndrome. I’ve also had others say they learned something new.”

He emphasizes that Klinefelter Syndrome “is one of the mildest chromosomal disorders, and men with this disorder will live a fairly normal and healthy life.”

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But in November 2024, Nicklow went viral after posting a TikTok about the threat to Theodore’s future cure. a potential ban on gender-affirming care, may include testosterone shots.

“My son was born with Klinefelter Syndrome. He has an extra X chromosome (XXY),” she wrote in the clip. “When he hits puberty, he will need testosterone replacement therapy. This is gender-affirming care. I fear that gender-affirming care will be banned at the federal level.”

Nicklow emphasizes to PEOPLE that “sex and gender are very complex” and blanket bans don’t take that into account.

“Yes, Theodore has an extra X sex chromosome, but he’s still male. He’s not intersex,” Nicklow shares.

Since posting this video, “he’s been in more than 25 states we passed laws Restricting or prohibiting transgender youth under the age of 18 from accessing puberty blockers, hormone therapy, and surgical care.”

The mother emphasizes that this situation may also affect her son.

“Gender-affirming care isn’t just for transgender youth. This will impact cisgender kids like Theodore,” she says. “Since his body will produce low testosterone, he will need testosterone replacement therapy when he grows up. Will he be deprived of gender-affirming care?”

Read the original article People