We’ve seen a range of birth defects over the years, some less common than others. These can be physical or developmental and sometimes come with severe obstacles, such as a need for surgery or other intensive medical care. Amazingly, despite their challenges, most people born with these conditions have the most positive and uplifting outlook on life. Michelle Kish was born with a rare condition known as Hallermann-Streiff Syndrome. Yet, she still manages to thoroughly love life and her joy is transmittable.
Born with Hallermann-Streiff Syndrome
Mary and Brad Kish, from Illinois, were anxiously awaiting the arrival of their daughter. Mary’s pregnancy had gone smoothly, and so did the birth of their new baby, Michelle Kish. However, it didn’t take medical professionals long to realize that Michelle had an unusual condition. In fact, her condition was so rare medical experts had to consult with textbooks and reach out to a geneticist from another hospital.
Michelle’s face structure was wider than average, and she was losing her hair. Moreover, her nosed was described as looking like a little beak. As it turns out, she had been born with Hallermann-Streiff Syndrome.
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Perplexed Medical Experts
“No one had ever seen it in person at Children’s Memorial Hospital, where Michelle was born. When the doctor gave us the diagnosis of Hallermann-Streiff syndrome my heart sank. I was worried how are we going to care for our child who had a rare genetic disorder that was one in five million.” Michelle’s mom told the Daily Mail in 2018.
Michelle had 26 of the 28 symptoms, so doctors were pretty confident in their diagnosis. In addition to Hallermann-Streiff Syndrome, Michelle also has dwarfism. Michelle’s condition requires a lot of medical support, including an electric wheelchair, hearing aid, probe, respirator, and visual aids. During her Daily Mail interview, Mary said of her daughter’s condition, “Now Michelle is a 20-year-old woman. She is smart as a poodle and is happier than ever. Michelle is one of the happiest 20-year-olds I know,” Mary continued, “She enlightens people’s lives with their joy. She knows she’s different but doesn’t let it break her down.”
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Understanding Hallermann-Streiff syndrome
Hallermann-Streiff syndrome is so rare that there are only 250 known cases around the world, the chances of being born with it are 1 in 5 million. Typically, those with Hallermann-Streiff syndrome have an unusually shaped skull, thin skin and hair, and dental abnormalities. In some cases, Hallermann-Streiff syndrome can also cause a smaller upper airway, requiring breathing support. Fortunately, the condition hasn’t been shown to impact cognitive abilities or intelligence.
Little is known about what causes Hallermann-Streiff syndrome, and researchers are still developing their understanding. The congenital disorder was first described in 1893 but wasn’t fully understood until 1948 by Hallermann and finally in 1950 by Streiff.
Living to the Fullest
Hallermann-Streiff Syndrome hasn’t slowed Michelle down in the least, and she has many hobbies and aspirations. She spends her time playing the piano and hanging out with her dog and hopes to one day have a “boyfriend with lots of hair.” Michelle aspires to be a pediatrician but has a backup career just in case. She would happily be a fashion designer or actress. Although she’s happy in life, she does wish she were a little taller so she “can go on every amusement park ride.” Additionally, she has a close relationship with her sister Sarah, who commented, “Every time I introduce Michelle to a new friend, they think she is really sassy and really funny. But end up liking her more than me.“
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Sources
- “Hallermann-Streiff syndrome – about the disease.” Genetic and Rare Diseases Information Center. Retrieved January 19, 2023.
- ” 23-yr-old with one of world’s rarest diseases goes through life with contagious joy.” Inspire More. Ashley Ziegler. May 12, 2020.