A public forum for those impacted by Pallister-Killian Syndrome. Please also visit our non-profit organization's site at www.pkskids.com
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…Continue
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…Continue
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…Continue
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…Continue
my son is 16 months (1yr) and one day i found him hitting his head with his hand and have no idea why. just today he started doing it and when i tried to stop him he punched himself in the eye really hard.I even woke up in the middle of the night a couple of times to the sound of him pounding on his head. Has anyone else had his problem before??? please help i wish he would stop because he is really going to hurt himself.