The 20-year-old woman who looks like a child

A 20-year-own woman has a rare genetic disease that means she is regularly mistaken for a child half her age.

Michelle Kish, from Illinois, USA, was born was Hallermann-Streiff syndrome, a condition so rare that at the time of her birth there were only 250 known cases worldwide.

Symptoms include distinct round, childlike facial features and a form of dwarfism that means Michelle only comes up to just above her sister’s waist.

At 20, Michelle often gets mistaken for someone much younger. Photo: Barcroft
At 20, Michelle often gets mistaken for someone much younger. Photo: Barcroft

"Do people assume that I am lot younger than I am? I think they do when they ask my age but they never say it,” Michelle said.

Michelle’s mother Mary, who is also her primary caregiver, said her daughter’s case was so rare, experts needed to be called in at Michelle’s birth.

“When I was pregnant with Michelle everything was normal. There was no issue at all through the pregnancy or through the delivery. It was very normal," said Mary.

Doctors immediately realised something was wrong with Michelle, but her condition was so rare that they had to draft in a geneticist from another hospital, who was able to diagnose Michelle from having seen pictures in medical textbooks.

“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.

"It was unknown what her prognosis was going to be. They couldn’t tell us because they had never seen it before and it was devastating.”

Michelle requires around-the-clock medical care, has a dedicated nurse to travel with her to school, and has to make frequent visits to hospital.

Michelle was diagnosed at birth, with experts called in to help with her rare condition. Photo: Barcroft
Michelle was diagnosed at birth, with experts called in to help with her rare condition. Photo: Barcroft

"I do have to go into the hospital a lot. I can’t count how many times but a lot. It’s like a second home to me, basically,” she said.

In total, Michelle has 26 of the 28 symptoms of Hallermann-Streiff syndrome, including craniofacial abnormalities, a small beak-like nose, a recessed chin, bilateral cataracts and frontal bossing of the forehead.

She also has a number of the secondary characteristics, such as dwarfism, cardiomyopathy, chronic pulmonary lung disease, microgastria, fragile bones and alopecia.

But despite the medical hurdles she faces, Michelle has flourished into a warm, bubbly adult, who loves playing piano, playing games on her iPad and spending time with her dog Piper.

"Now Michelle is a 20-year-old you lady, she is smart as a whip and happy as ever. She is one of the happiest 20 year olds I know,” said Mary.

Despite her symptoms, Michelle attends school and loves doing what other young women doing. Photo: Barcroft
Despite her symptoms, Michelle attends school and loves doing what other young women doing. Photo: Barcroft

"My favourite thing about Michelle is that she has high self-esteem, she loves herself and she really has a lot of confidence, she moves on every day
with a happy heart and she makes me happy even when I’m down in the dumps.

"You don’t even have to say a word to her and she will say, ‘Mum, are you okay? Is there something I can do? You know I love you.'

"If she sees a little girl crying. She will go, ‘Mum is that little girl okay? Can I go over and say hello to her?’ and I will say, ‘Sure Michelle go right ahead.’
"She lights up people’s lives with how happy she is. She knows that she is different but it doesn’t bring her down.”

Michelle’s clearly the apple of her family’s eye, with sister Sarah admitting Michelle quickly wins people over.

Michelle's supportive family help provide her 24/7 care. Photo: Barcroft
Michelle's supportive family help provide her 24/7 care. Photo: Barcroft

"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,” said Sarah.

But despite her positive outlook, Michelle admits there are some aspects of her condition that get in the way of her doing the things she wants to.

"The most annoying thing being small is there are lot of amusement park rides that I want to go on and I can’t because they have a stupid height restriction,” said Michelle.

“Also my tracheostomy tube means I can’t go underwater, which sucks because I want to be a mermaid!”

Michelle also dreams of following in her sister Sarah’s footsteps and finding a boyfriend - ideally a long-haired man who is in touch with his emotions.

“I’ve never had a boyfriend, but I want one, because I am already 20 and Sarah had her first boyfriend at high school.

"I would love a boyfriend with lots of hair. I don’t care about the height because pretty much everyone is taller than me!"

But for the time being she relishes the company of mum Mary, dad Brad, 64, sister Sarah and her beloved dog Piper.

Sarah says her sister is all about the sass. Photo: Barcroft
Sarah says her sister is all about the sass. Photo: Barcroft

And despite her diminutive size, Michelle is determined to dream big for the future.

"My dream job would be to be a paediatric doctor, but my two backups would to be a fashion designer or an actress,” she said.

Michelle is happy in the family home, but with government proposals to change Medicaid still on the horizon, her parents worry her future is uncertain.

"Michelle requires private duty nursing in the home in order for her to stay at home meaning she needs 24 hour care, throughout the night which you have to monitor water in the tubing of her ventilator, suction her trach, administer medications and g-tube feedings,” explained Mary.

"If the Medicaid cuts the waver program that she’s on, she’ll have to live in an institution and Michelle would not thrive in an institution.

"Michelle’s long term outlook is unknown at this point. We have had several close calls but overall she is fairly healthy at the moment and we pray to god that they don’t take our nursing away.

"Michelle gives back way more than she receives because she lightens up people’s lives. With her conversation, with her empathy towards other people, her unconditional love to everybody and anybody."

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