By Tom Midlane @GoldenLatrine
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Videographer / Director: Adam Gray
Producer: Tom Midlane, Ruby Coote
Editor: Grant Hanson-Vaux
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.
"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: “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."
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.
Mary said: “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 round-the-clock medical care through the night, has a dedicated nurse to travel with her to school, and has to make frequent visits to hospital.
"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.
Mom Mary said: "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.
"My favorite 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, ‘Mom, are you okay? Is there something I can do? You know I love you.'
"If she sees a little girl crying. She will go, ‘Mom 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.”
Sister Sarah added: "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."
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.
She said: "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.
“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 mom Mary, dad Brad, 64, sister Sarah and her beloved dog Piper.
And despite her diminutive size, Michelle is determined to dream big for the future.
She said: "My dream job would be to be a paediatric doctor, but my two backups would to be a fashion designer or an actress."
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.
Mary said: "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.
"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."