A Forum For Those Touched By Pallister-Killian Syndrome

A public forum for those impacted by Pallister-Killian Syndrome. Please also visit our non-profit organization's site at


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Started by ian in Untitled Category. Last reply by Carla/Samantha Stobbe Aug 18. 4 Replies

Crawler Equipment

Started by Carrie Bergman in Untitled Category Jul 9. 0 Replies


Started by Carrie Bergman in Untitled Category. Last reply by Kathy Ashby Mar 7. 23 Replies

Blog Posts

Facebook Parent Group

Posted by Gretchen & Simon on February 26, 2015 at 5:27pm 0 Comments

There is an active Parent Only Facebook group.  If you would like to be added to this, friend Gretchen on Facebook and send her a message.  Thanks!

Feeding Problems? or Not?

Posted by opal burks on April 17, 2014 at 9:10pm 2 Comments

Back in February Pia was hospitalized fir what they called Human metapnuemovirus. She stayed 2 weeks in PICU and was sent home. She was still congested but we were told that this would ease in time. Since then she has been hospitalized 2 more times for the same congestion. The congestion was so bad at one point that me and my husband found ourselves giving rescue breaths. She is being treated for asthma and acid reflux. She still has repeated congestion and the congestion seems to get worse… Continue

Ohio PKS Kids

Posted by Linda Jones & Ashley on January 16, 2014 at 1:48am 4 Comments

Today I met Kristen DeSantis for the 1st time.  Although the circumstances were not the best we were able to talk and compare the progress of Bella and Ashley.  It was finally nice to talk to someone else about PKS.  When Ashley was diagnosed over 21 years ago we had no one to talk to.  Kristen was told today that the were 3 children with PKS that had surgery this week.  We would like to make contact with that family if at all possible.  I would also like to make contact with any other…


Annalee Elise Hand 10-25-2013 Forever in our hearts!!

Posted by Arianna Hand on November 7, 2013 at 11:37am 7 Comments

On October 21, 2013, I went in for my monthly check-up. I heard my beautiful baby's heartbeat.....not at all knowing it was going to be the last time. My doctor did everything as usual but when she measured my belly she said that I was measuring larger than I should be at 26 weeks. She said that it was probably because Annalee wasn't swallowing fluid like she should. The week prior my whole family contracted the stomach virus, the effect that took on me was far worse than I had thought. I…



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PKS Kids Video Montage (updated!)


Latest Activity

Marion Kolb liked Gretchen & Simon's group German Families
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