Pallister-Killian Syndrome

By: Jessica Aspiras
By: Jessica Aspiras

"When the news came that there was something wrong, it was totally shocking and devastating."

Jim and Gretchen Peters, of Marshall, have been married almost 17 years. During that time they've been blessed with five children ranging from 16-years to just 17-months. While the four oldest came out healthy and "normal," the youngest, Simon, was born with Pallister-Killian Syndrome.

"We don't know if he'll walk or talk and he may. It's incredible what some children like him can do and what some never do."

P.K.S. is a genetic anomaly that is extremely rare. It's a duplication of the short arm of the 12th chromosome. And it exsists in different cells. Therefore, it causes an array of symptons. Currently Simon is afflicted with seizures, vision impairment, hearing loss, low muscle tone, and mental retardation.

"When I wanted to say, 'Why?' I had to stop myself and say, 'This is what God intended for us, so this is where we're going to go with life."

But the problems he's living with now aren't necessarily the only ones he'll have during his lifetime, because P.K.S. is unpredictable.

"We've seen just about every specialist from cardiologists, gastroenterologists, and neurologists."

Unfortunately the lifespan of children with Pallister-Killian Syndrome is also unknown. So the Peters family cherishes the time they have with their special little man.

"There's no trying to hide him or be embarassed by him. I asked my daughter, 'Does he look funny?' and she said, 'No, he looks handsome, he's my brother.'"

And no matter what, there are big dreams for this unique baby, although some may consider them small.

"I hope that Simon will be able to communicate with us and eventually walk. Little steps for a child like him are huge."

The Peters are hoping to raise awareness about P.K.S. and form a non-profit organization for families affected by the disorder. For more information you can log on to www.pksonline.org or www.pk-syndrome.org.


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