Amazing Kids, Amazing Stories: Kenzie's Story

Pediatric Genetics and Metabolism

Amazing Kids, Amazing Stories: Kenzie's Story

Amazing Kids, Amazing Stories: Kenzie SeversonEleven-year-old Kenzie Severson of Sun Prairie, Wisconsin is one of only 200 people in the entire world - her aunt Juli is another - diagnosed with a rare genetic disorder known as Dubowitz Syndrome.

Often characterized by short stature, distinctive facial features, a high-pitched voice and eczema, Dubowitz Syndrome is something that Kenzie and her family seem to take in stride.

"We knew right from birth that Kenzie would have a lot of special needs, but nobody knew until she was diagnosed at 18 months what they were," says her mom, Jami, a nurse in Madison. "We were relieved to finally have an answer, and I'm sure the teaching hospital environment at UW helped pinpoint Kenzie's disease."

Now a fifth grader at Columbus Middle School, Kenzie has undergone more than 15 surgeries to correct a cleft palate, treat frequent ear infections and reconstruct her eyelids. She also has been taking growth hormone injections for several years and comes to American Family Children's Hospital or the Waisman Center for clinic appointments at least twice a month - usually capped off by a lunch date with mom.

"Everyone at the hospital makes Kenzie feel so comfortable; she always feels like a celebrity," says Jami. "When you think about all of the pediatric services Kenzie has needed - from genetics to endocrinology to orthopedics to plastic surgery to ophthalmology to ear, nose and throat - we are very lucky to have these incredible resources so close to home."

In May 2008, Kenzie was one of several patients interviewed on the air during the fourth annual Champions for Kids Radiothon, a three-day event that raised $636,000 for the hospital. Sponsored by Clear Channel Madison, the Radiothon has attracted more than $2 million in pledges since 2005.

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"Kenzie's family provided an insight into what families go through in the hospital," says Tom Young, special events manager. "Most families never have to think about this, but the Radiothon really helps bring the hospital experience to a much broader audience that has been very generous with its support."

David Wargowski, MD, a UW Health Pediatric Geneticist who originally diagnosed Kenzie's Dubowitz Syndrome in 1998, has particularly enjoyed watching Kenzie grow into a young lady.

"It has been such a pleasure to work with Kenzie and her family. She has a great attitude and simply refuses to let this disease or her physical differences define who she is."

What Kenzie does above all, is teach those around her by example.