All parents face an exciting nine-month wait before it’s finally time to meet the little bundle of joy that has grown in mommy’s belly.
There’s simply no better feeling than when the baby is finally born into the world and you hear it screaming for the first time.
But for some parents, a child’s birth can turn into something they could never have imagined.
So asking for prayers. Michelle is in the PICU at LurIn the late 1990s, Mary and Brad Kish, of Illinois, USA, waited patiently to meet their daughter.
There had been no problems during Mary’s pregnancy, and the childbirth went well. There were no indications that anything was wrong with their baby daughter Michelle during the delivery.
But when she opened her eyes, doctors immediately saw that something was awry. They didn’t know what it was before looking deep into the medical books and consulting a geneticist from another hospital.
Music therapy this afternoon and going 🏡 tomorrow morning!!!💚💚💚💚ie Children’s Hospital with 2 intestinal infections. She’s been…
Michelle had a very round and childlike face. She was also suffering from hair loss and had a nose that almost looked like a small beak.
It turned out she was suffering from Hallermann-Streiff syndrome, a genetic disease so rare that there are only 250 known cases worldwide.
”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,” Michelle’s mom told Daily Mail.
The disease is characterized by 28 different symptoms, and Michelle suffers from 26 of them. The disease affects only one in five million people but sadly causes a lot of health problems.
In addition to Hallermann-Streiff syndrome, Michelle also suffers from a form of dwarfism which means that she barely reaches above her sister’s waist, despite the fact there’s only two years difference between them.
Michelle’s condition means she needs a lot of help and assistance – such as an electric wheelchair, hearing aid, probe, respirator, and visual aids.
The syndrome has also forced Michelle and her family to spend a lot of time in the hospital. She is often mistaken for being a child because of how she looks, even though she’s 25 years old today.
“Now Michelle is a 20-year-old woman, she is smart as a poodle and she is happier than ever. She is one of the happiest 20-year-olds I know,” mom Mary told the Daily Mail in 2018. She continued:
“She enlightens people’s lives with their joy. She knows she’s different but doesn’t let it break her down.”
Although Michelle really had to fight in headwind, she is truly a fantastic and unique young woman.
Among other things, she dreams of following in her big sister’s footsteps and getting a boyfriend. She does not care about his height, because almost everyone is taller than her, but she hopes tha he will have long hair.
She also dreams of becoming a doctor.
