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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Congenital diaphragmatic hernia with PKS

Started by Erin Urbanski in Untitled Category. Last reply by Alessia Acquarola 4 hours ago. 1 Reply


Started by Maria Schauer in Untitled Category. Last reply by Gretchen & Simon Jan 14. 1 Reply


Started by ian in Untitled Category. Last reply by Carla/Samantha Stobbe Aug 18, 2015. 4 Replies

Arjun in Hospital for Cluster of Seizures

Started by Inder Seth in Untitled Category. Last reply by Inder Seth Jul 10, 2015. 10 Replies

Crawler Equipment

Started by Carrie Bergman in Untitled Category Jul 9, 2015. 0 Replies

Blog Posts

Advice for new member

Posted by Maria Schauer on November 2, 2015 at 7:32pm 1 Comment

My niece got diagnosed with PKS at one month old. She is two months now and just got her surgery to fix her imperforated anus. She will have her spine surgery in two weeks.
We are devastated; life became a big question mark. The uncertainty is hard.
Any advice will be greatly appreciated.

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…



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PKS Kids Video Montage (updated!)


Latest Activity

Alessia Acquarola replied to Erin Urbanski's discussion Congenital diaphragmatic hernia with PKS
"Hi Erin, We met a young family in Perth Western Australia that went through the same. Is you like I can forward your email address to them. They are now helping us with our PKS Foundation. Yes it can be difficult and I know…"
4 hours ago
Erin Urbanski updated their profile
Erin Urbanski posted a discussion

Congenital diaphragmatic hernia with PKS

Is there anyone out there who has experienced this. I need to talk to someone who has. I lost my PKS baby boy 7 weeks ago and have been going crazy looking for someone who suffered from the same thing he did. He had severe left sided CDH, if anyone can relate, PLEASE message me.
Christine Gibson posted a status
"Is there any addition information available for the Face2Face conference?"


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