I’m Not A Child, I’m 20 | BORN DIFFERENT

“I’m 20 years old, but people always think I’m a child.”

Michelle Kish from Illinois, USA, is not your average young woman. At 20, she’s regularly mistaken for someone half her age—thanks to Hallermann-Streiff syndrome, a genetic condition so rare that when Michelle was born, there were only 250 known cases worldwide.

Her syndrome gives her distinct, childlike facial features and a form of dwarfism—Michelle stands just above her older sister’s waist. She requires round-the-clock medical care, but she’s blossomed into a bright, bubbly adult, full of sass and humor. She loves playing on her iPad, watching TV, and spending time with her loyal dog, Piper.

Growing Up Different

Michelle’s mother, Mary, remembers her pregnancy was completely normal. No one suspected anything was wrong until a geneticist recognized the syndrome from a medical textbook—no one had ever seen it in person. “When I learned my child had a disorder so rare it happens once every five generations, I was devastated,” Mary recalls.

Hallermann-Streiff syndrome has 28 characteristics; Michelle has 26. Some of her symptoms include:

Distinct craniofacial features
Bilateral cataracts
Dwarfism
Frontal bossing
Small, beak-like nose
Dental anomalies
Recessed chin
Small airway
Stenosed ear canals
Cardiomyopathy
Chronic lung disease
Microgastria
Fragile bones
Skin atrophy
Alopecia

Despite frequent hospital visits—“it’s like my second home,” Michelle jokes—she remains one of the happiest 20-year-olds her family knows.

Challenges & Dreams

Michelle faces daily challenges. Her size means she can’t ride many amusement park rides. Her trach (tracheostomy) means she can’t swim underwater, even though she dreams of being a mermaid.

She admits: “People always assume I’m much younger. It’s annoying sometimes, especially when they ask my age.”

Michelle’s biggest struggle is loneliness. She’s never had close friendships like her older sister Sarah, and she longs for a boyfriend—“ideally with long hair!” she says with a laugh. “I’m already 20. Sarah had her first boyfriend in high school. I want one really bad.”

Sarah, her sister, says: “Michelle is confident and strong. She’s independent, and she’s sassy—whether she admits it or not!”

Family, Care, and Independence

Michelle requires 24-hour nursing care at home, paid for by Medicaid. Her ventilator, affectionately named “Sophia,” is part of her daily routine. If government aid were cut, Michelle would have to live in an institution—something her family says would crush her spirit.

Despite her health struggles, Michelle is ambitious. Her dream is to become a pediatric doctor. “And if that doesn’t work out, I’ll be a fashion designer or an actress!” she says.

Her family describes her as tough as nails. “She lights up people’s lives,” says Mary. “If someone’s having a bad day, she’ll always notice. She knows she’s different, but it never gets her down.”

Living Life Her Way

Michelle’s long-term prognosis is uncertain—she’s had several close calls—but with her family’s care and her own fierce spirit, she’s thriving. “I think I’m different from the average 20-year-old,” Michelle says. “But that’s okay.”

She’s not a child—she’s a young woman, living life on her own terms, and inspiring everyone she meets.