Support, Research and Advocacy for Rare and Special Families

MWS Stories

United States > Kelly

Kelly, 31 years old

My mom says she had a normal pregnancy and birth. The apgar test that is done right after birth to check for any problems was normal as well. During Kelly’s first year, she had trembling spells but the pediatrician said it was fine. At around 15 months, Kelly had a full blown seizure and my parents took her to the hospital. She was then sent to Children’s Hospital in Chicago. The doctors saw that her corpus callosum was not developed and that’s when they knew she had some sort of retardation. The doctors did not know what to do so they shunted her. My parents soon realized that she never needed to use the shunts, but that is what doctors did back in the 1970s.

When my parents got home from Children’s Hospital, they immediately started Kelly in an early intervention program, private speech and language and private physical and occupational therapy. My parents have always been diligent with making sure Kelly has the best training and schooling.

My parents worked closely with a geneticist for years. For about 28 years, we did not know what Kelly had. No one knew. A few years ago we got a call from the geneticist that she was pretty sure Kelly had Mowat Wilson Syndrome. All we had to do was look at the pictures of other people with MWS and we knew she was right.

Life hasn’t changed since the diagnosis. Kelly is still the amazing sister and daughter she always has been. She is the most loving, accepting and pure person I know. She hugs and kisses everyone she meets (and even tries to hug and kiss strangers). She especially loves babies, kids, dogs and cute guys. She is a big flirt!

When Kelly’s happy her whole face lights up and her laugh is absolutely contagious. When she’s upset she taps her chin on her shoulder and grunts and we know that’s her way of swearing. She’s definitely happy far more often than she is not, which is more than I can say for most people I know!

Kelly loves to help with the groceries, have us paint her nails, carry around our purses (we’ve tried buying her purses but she would much rather borrow ours), help cook, play on the computer, look at family pictures, play with our family dog, Zeus and dance to the radio.

If everyone in the world was more like Kelly, it’d be a happier place. We always say that Kelly is far more normal than any of us . . .and it couldn’t be more true! 🙂

Parents Paula and Chuck

Siblings Jami (30 years old), Caitlin (23 years old) and Zeus (the dog)

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