When Mary Kish and her husband Brad were expecting their second child, everything seemed to be going normally. There was not one sign that something out of the ordinary was happening leading up to the birth of their daughter.
“There was no issue at all through the pregnancy or through the delivery,” Kish said. “It was very normal.”
However, not long after the birth, doctors knew something was not right with the Kish’s newborn daughter, Michelle. The baby, who didn’t look like other babies do at birth, had to be seen by a geneticist because her condition was so rare.
The geneticist recognized the syndrome from photos in textbooks but had never actually seen it in real life.
Little Michelle was diagnosed with Hallermann-Streiff syndrome, a genetic disorder so rare that it was a one-in-five-million incidence.
“It was unknown what her prognosis was going to be,” recalled Kish. “They couldn’t tell us because they had never see it before and it was devastating.”
Michelle’s lengthy list of symptoms included childlike facial features, a form of dwarfism, and a beak-shaped nose.
Now at the age of 20, Michelle has 26 of the 28 symptoms and only reaches above her sister’s waist in height.
She is still mistaken for a child regularly and visits the hospital often, which she explains to be like her second home. But even though she has this condition, Michelle has a zesty, contagious personality and still has a zeal for living life and fulfilling her dreams.
“She is one of the happiest 20-year-olds I know,” said Kish. “… she loves herself and she really has a lot of conficence, she moves on every day with a happy heart and she makes me happy even when I’m down in the dumps.”
Despite this, Michelle admits there are a few downsides to her condition, the most annoying being height restrictions at amusement rides and water restrictions.
“Also, my tracheostomy tube means I can’t go underwater, which sucks becaue I want to be a mermaid,” Michelle said.
But amusement rides aside, Michelle has her sights set on even brighter dreams. She hopes to one day follow in her sister Sarah’s path and have a boyfriend; a man with long, flowing hair is just her type.
And for her future job, Michelle sure didn’t forget to set those goals in place. “My dream job would be to be a pediatric doctor, but my two backups would be a fashion designer or an actress.”
Until then, the spunky 20-year-old enjoys her time at home with mom and dad, sister Sarah, and her lovable dog, Piper. And as Michelle waits for her dreams to arrive, she is busy living her life in a beautiful way: spreading joy to those around her.
“Michelle gives back way more than she receives because she lightens up people’s lives,” said Kish. “With her conversation, with her empathy towards other people, her unconditional love to everybody and anybody.”
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