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



Equipment Exchange

A mom is offering a pair of hearing aides, FFS (Free For Shipping)   They would of course need new molds and to be adjusted by an audiologist. 

They were not covered by our insurance at the time and they had to purchase them through Kaiser. They were previously bought for someone else that ended up not working for them, so we got them at 50% off. Paid $2500. They are now 4 years old, but were used for less than 1 year.  She is just asking for shipping costs only, which I'm sure in the…


Created by Gretchen & Simon Feb 25, 2013 at 11:58am. Last updated by Gretchen & Simon Feb 25, 2013.

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Pre-teen girls Menstrual Cycles

Started by Kelsey/ cammie in Untitled Category. Last reply by Katja Barlic & Ela Jul 7. 4 Replies

Vimpat (lacosamide)

Started by Katja Barlic & Ela in Untitled Category Jun 15. 0 Replies

Trying to stay strong

Started by Inder Seth in Untitled Category. Last reply by Gretchen & Simon Jun 12. 4 Replies

conor update

Started by elaine and conor :) in Untitled Category. Last reply by Inder Seth Jun 8. 5 Replies

PKS skin biopsy exam - please help

Started by Carla Morgado in Untitled Category. Last reply by misty gatson May 10. 12 Replies

Blog Posts

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…



Posted by Marcy Stayer on July 2, 2013 at 8:15pm 2 Comments

So, my FAVORITE caregiver has just given notice. She is in school, at age 60, and is coming up on her last semester, which she's been told is the toughest of all. So, to prepare for her future she felt she needed to quit her position with us and focus on her studies. It's difficult to let her go, but I know it's going to be ok. I've been through this many times, as it's so difficult to find good dependable and caring help these days.

I'm a service coordinator with the dept of…



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PKS Kids Video Montage (updated!)


Latest Activity

Linda Jones & Ashley left a comment for Heather
"Welcome Heather.  I am the grandmother of Ashley who is 22 years old and she is a PKS kid."
tracy and Harley-Jae Ayres left a comment for Heather
"Welcome heather :)"
tracy and Harley-Jae Ayres commented on tracy and Harley-Jae Ayres's photo

Harley-jae and his girlfriend !

"Thanks gretchen,hugs back to you too !!!"
Gretchen & Simon left a comment for Heather
"Welcome Heather, I'm sure you have lots of questions about your niece/nephew!"


Birthdays Tomorrow



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