A rare genetic condition doesn’t stop Michelle from living her life
Michelle was born with HallermannStreiff syndrome and was one of only 250 known cases worldwide when she was diagnosed. Despite this, she is known for her happy outlook on life.
hen Michelle Kish and her sister stand side by side, it’s easy to understand why people think they were born years apart.
Michelle, 20, only comes up to 22-year-old Sarah’s waist.
She was born with Hallermann-streiff syndrome, a condition so rare that at the time of Michelle’s birth, there were only 250 known cases worldwide.
Symptoms of the condition include distinct round, childlike facial features and a form of dwarfism that means Michelle is regularly mistaken for someone half her age. The diagnosis was a shock. ‘When I was pregnant, everything was normal. There was no issue at all through the pregnancy or through the delivery. It was very normal,’ Michelle’s mum, Mary, explains.
Doctors immediately realised something was wrong, but Michelle’s condition was so rare that they had to bring in a geneticist from another hospital, who was able to diagnose her from having seen pictures in medical textbooks.
‘No-one had ever seen it in person at Children’s Memorial Hospital, where Michelle was born,’ Mary, from Illinois, US, goes on to explain.
‘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.’
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. It means she requires round-the-clock medical care and a dedicated nurse who travels to school with her.
‘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,’ Michelle admits.
But despite these medical hurdles she has to face on a daily basis, Michelle has flourished into a warm, bubbly adult, who loves playing piano, gaming on her ipad and spending time with her dog Piper.
‘Now Michelle is a 20-yearold lady, she is smart as a whip and happy as ever. She is one of the happiest 20-year-olds I know,’ her mum reveals.
‘My favourite thing about her is that she has high selfesteem, 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 OK? Is there something I can do? You know I love you.”
‘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 sister Sarah completely agrees.
‘Every time I introduce Michelle to a new friend, they think she is really sassy and really funny.
‘But they end up liking her more than me,’ she laughs.
And as for Michelle herself, her attitude is to roll with the hurdles she faces.
‘The most annoying thing about being small is there are a lot of amusement park rides that I want to go on and I can’t because they have a stupid height restriction,’ she sighs.
‘Also my tracheostomy tube means I can’t go underwater, which sucks because I want to be a mermaid!’
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 be a fashion designer or an actress,’ she says.
And she is determined her condition won’t stop her following in her sister’s footsteps and finding a boyfriend – ideally a longhaired 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,’ Michelle explains. ‘I would love a boyfriend with lots of hair. I don’t care about the height, because pretty much everyone is taller than me!’
MICHELLE MAY HAVE A RARE GENETIC CONDITION THAT MEANS SHE’S MISTAKEN FOR SOMEONE HALF HER AGE, BUT IT DOESN’T STOP HER LIVING LIFE TO THE FULL