A 20-year-old woman has a rare genetic disease that means she is regularly mistaken for a child.
Michelle Kish, from Illinois, 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 Miss Kish only comes up to just above her sister’s waist.
She 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.
Despite the constant medical attention she receives, she has flourished into one of the ‘happiest’ girls who aspires to be a paediatric doctor.
She now 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.
‘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,’ Miss Kish said.
Michelle Kish, from Illinois, was born was Hallermann-Streiff syndrome, a condition so rare that at the time of her birth there were only 250 known cases worldwide
Her 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 knew something was wrong
Doctors immediately realised something was wrong with Miss Kish, but her condition was so rare that they had to draft in a geneticist from another hospital.
The specialist was able to diagnose Miss Kish from having seen pictures in medical textbooks.
Mrs Kish 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.’
Symptoms include distinct round, childlike facial features and a form of dwarfism that means Miss Kish only comes up to just above her sister’s waist
She relishes the company of mother Mary, father Brad, 64, sister Sarah and beloved dog Piper
Miss Kish added: ‘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.’
What symptoms does she have?
In total, she 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, Miss Kish has flourished into a warm, bubbly adult, who loves playing piano, playing games on her iPad and spending time with her dog Piper.
Mrs Kish added: ‘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.
Doctors immediately realised something was wrong with Miss Kish when she was born
The specialist was able to diagnose Miss Kish from having seen pictures in medical textbooks
‘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.’
Miss Kish’s 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.’
The downsides of her condition
But despite her positive outlook, Miss Kish 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!’
Finding a boyfriend
Miss Kish 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.
She said: ‘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 Mrs Kish, her father Brad, 64, sister Sarah and beloved dog Piper.
She 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
Despite the constant medical attention she receives, she has flourished into one of the ‘happiest’ girls who aspires to be a paediatric doctor
Miss Kish 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
And despite her diminutive size, Miss Kish 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.’
Miss Kish is happy in the family home, but with government proposals to change Medicaid still on the horizon, her parents worry her future is uncertain.
Requiring round-the-clock care
Mrs Kish added: ‘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.’
Miss Kish has flourished into a warm, bubbly adult, who loves playing piano, playing games on her iPad and spending time with her dog Piper
And despite her diminutive size, Miss Kish is determined to dream big for the future